Songs of the Gorilla Nation: My Journey Through Autism

Songs of the Gorilla Nation: My Journey Through Autism

by Dawn Prince-Hughes Ph.D.
Songs of the Gorilla Nation: My Journey Through Autism

Songs of the Gorilla Nation: My Journey Through Autism

by Dawn Prince-Hughes Ph.D.

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Overview

“This is a book about autism. Specifically, it is about my autism, which is both like and unlike other people’s autism. But just as much, it is a story about how I emerged from the darkness of it into the beauty of it.”

In this elegant and thought-provoking memoir, Dawn Prince-Hughes traces her personal growth from undiagnosed autism to the moment when, as a young woman, she entered the Seattle Zoo and immediately became fascinated with the gorillas.

Having suffered from a lifelong inability to relate to people in a meaningful way, Dawn was surprised to find herself irresistibly drawn to these great primates. By observing them and, later, working with them, she was finally able to emerge from her solitude and connect to living beings in a way she had never previously experienced.

Songs of the Gorilla Nation is more than a story of autism, it is a paean to all that is important in life. Dawn Prince-Hughes’s evocative story will undoubtedly have a lasting impact, forcing us, like the author herself, to rediscover and assess our own understanding of human emotion.

Product Details

ISBN-13: 9781400082155
Publisher: Crown Publishing Group
Publication date: 03/22/2005
Edition description: Reprint
Pages: 240
Product dimensions: 5.20(w) x 8.00(h) x 0.55(d)

About the Author

Dawn Prince-Hughes received her M.A. and Ph.D. in interdisciplinary anthropology from the Universität Herisau in Switzerland and is an adjunct professor of anthropology at Western Washington University. She is the author of Gorillas Among Us: A Primate Ethnographer’s Book of Days and the editor of Aquamarine Blue 5: Personal Stories of College Students with Autism. She is on the advisory board of ApeNet, a nonprofit organization.

Read an Excerpt

A Chaos of Noise:
Understanding Autism

I was not diagnosed with Asperger’s Syndrome until I was thirty-six. For me, as for other people diagnosed well past their childhoods, the fact of my continued existence seems no minor miracle. As I look back over the painful years I spent alienated, different, disconnected, and hurting, it’s hard to understand how I made it and how it took me so long to find the reason that I lived like this.

One of the many reasons it took me so long to get a diagnosis is that beliefs about what autism is and what it looks like are often very narrow and, as a result, inaccurate. This, it can be argued, is the result of media portrayals of autistic people, which come off as one dimensional and made from a single template mold. Additionally, well-meaning documentaries sometimes capitalize on this same image, either ignoring or ignorant of the great diversity among autistic people. As a result, the public at large tends to hold in its collective consciousness a certain manifestation of classic autism, Kanner’s Syndrome, the salient features of which are impairments in the use of nonverbal, expressive gestures (like facial expression and body posture), an inability to form social relationships with peers, a flat affect, delayed or absent development of spoken language, impaired ability to initiate or sustain a conversation, a preoccupation with restricted patterns of interest, a compulsion to perform specific routines or rituals, flapping or twisting, and a preoccupation with parts of objects.

Since Kanner described this form of autism, however, and in spite of persistent images of autism associated with it, further evidence has illuminated the fact that autism falls along a spectrum that shades off into clinical pictures that are very difficult for people to notice in brief encounters with autistic people like me, people who, as “high-functioning” autistics, are often given a diagnosis of Asperger’s Syndrome.

One might ask how an autistic person could possibly go undiagnosed until adulthood. Asperger’s Syndrome only made it into the Diagnostic and Statistical Manual of Mental Disorders–the compendium of diagnostic criteria for all known psychological pathologies–in 1994, but there are other factors as well. As I mentioned, most high-functioning autistic people, not knowing what is “wrong” with them, develop a lifetime pattern of using their intelligence to find ways to appear normal.

Asperger’s Syndrome was first recognized and documented by Hans Asperger, an Austrian psychiatrist working in the 1940s. What separates Asperger’s Syndrome patients from their lower-functioning counterparts with classic autism are two criteria. First, they show no clinically significant delay in language development (using single words and communicative phrases at the appropriate developmental stages). Second, they evince no clinically significant delay in cognitive development, in learning age-appropriate self-help skills, in learning adaptive behavior (other than social interaction), or in developing curiosity about the environment.

Despite these relative advantages, Asperger’s young patients still exhibited the same sets of sensory and behavioral characteristics: they lacked the ability to connect socially and to communicate effectively; they engaged in perseverative behaviors, demonstrated extremely narrow interests (to the exclusion of all other areas), and had acute sensory sensitivities and prodigious long-term memories. I certainly exhibited these behaviors: 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.

My perseverative behaviors were many. I would listen to Simon and Garfunkel records over and over again until I was made to stop. I would feel, for example, that I needed to hear a particular song seven times, and I would have a meltdown if stopped from completing this cycle. I would need to collect a certain number of lightning bugs in one evening, or the day was ruined. I would count the pulsating whir of katydids until I felt the number was right, and then I could fall asleep.

Finally, my sensory problems were also symptomatic of Asperger’s. For instance, I held my hands in tight balls because I could not cope with the possibility of getting dirt on my palms. I developed a trick of picking things up using my thumb and the side of my index finger so that I wouldn’t have to uncurl my hands. I could not stand the feeling of flour or dust on any part of my body, and it set my teeth on edge to hear someone wiping flour on a board or rubbing their dusty hands together. Dust between my toes was enough to send me into a full-blown rage.

Now as then, which category an autistic person falls into in terms of official diagnosis is based on the pattern of the person’s speech acquisition, their general level of intelligence, and other pieces of clinically pertinent information given by the autistic person or their family and informed by early childhood symptoms. Significant but rarely discussed is the additional deciding component in the diagnosis: the discretion of the diagnostician and her or his level of familiarity with autism spectrum disorders. When I finally sought a diagnosis, it took a great deal of research to find a physician experienced enough to make the accurate assessment I needed.

Many people with Asperger’s Syndrome are not only cognitively intact but are actually gifted intellectually. Many have intelligence quotients in the very superior range. Autistic people in this category often use their profound intellectual capacities and acute memory skills to learn coping strategies that help them blend in. Because high-functioning autistic people may be invisible in this way, old stereotypes are reinforced, putting these people in an impossible position: if you can learn to interact socially, go to college, hold a job, and have a relationship, you can’t possibly be autistic. Not only the public but even professionals who study autism are blind to the pain and cost, the silent desperation and continued psychological struggles that high-functioning autistics undergo every single day.

Many people, again lay and professional alike, believe that all people with autism are by definition incapable of communicating, that they do not experience emotions, and that they cannot care about other people or the world around them. My experience, both personally and with others like me, is that in many cases quite the opposite is true. A significant number of autistic people who care deeply about all manner of things, and are profoundly emotional about them, share these capabilities in the privacy of their journals, diaries, and poetry. They do not show them to the world, which is too intense and often too destructive or, worse, dismissive. They do not show them to professionals, whose beliefs about the abilities of autistic people and the power they wield over their clients sometimes make them too frightening to challenge. They do not even show them to one another. And so a vast resource of knowledge about the diversity and beauty of autism rests on countless pages, like layers of archaeology, covered with the dust of fear.

Since I had the gorillas to help me, I was able to circumvent my problems and attain a Ph.D. I have a couple of friends and some treasured colleagues within my Weld. I have a family–a partner and a son. But even with my experience with the gorillas, I am still a person with a neurological dis/order, and like others, I have been forced to carefully cover and compensate, so that it takes other people a while to notice that I have profound difficulties–another factor that often delays diagnosis.

This strategy, so often employed by high-functioning autistic people, seems to be more successful with age. But all the autistic people I know (including myself) report that the strategy isn’t perfect and never hides our uniqueness completely. Like others who seek to be what they are not, we invariably end up with secondary problems engendered by chronic anxiety. As rage and frustration are pushed below our consciousness, we suffer depression. Somatic difficulties like stomachaches and headaches and other ailments can be chronic as a result of unrelenting anxiety and the repression of coping mechanisms while trying to fit in. Painful memories of past failures to be normal, and mounting evidence of our inadequacies, our failed attempts to “fit in,” dog us. Comfort comes, oddly enough, in the form of increasing compulsions and a fierce rigidity that may cover the trail leading back to their causes. By the time a high-functioning adult seeks help–and most do not–the accretion of secondary psychological problems and the exacerbation of certain autistic features are so tangled that initial misdiagnosis, like my own, seems unavoidable.

This phenomenon is made worse by our tendency, as we grow older, to try to push our painful memories aside. Our parents may do the same. This is an unfortunate reality, because accurate memories of an autistic person’s childhood and the histories of our symptoms are the very key to an accurate diagnosis. Only after an accurate diagnosis of autism is made can a person begin to understand why they are the way they are and why they always have been this way; only then can they begin to heal from the past and accept the gifts they offer the future.

The restoration of spirit that I achieved through belonging–first with the gorillas, and then to a group of people like myself at long last–is no different for autistic people than it is for all other people who need companionship. It is this sense of companionship that validates one’s experience from afar. It is crucial for our sense of well-being and the awakening of our potential. But it is also, after this kind of healing, essential for our emergence as individuals.

I am an individual. I am different, for reasons germane to the phenomenon of autism and reasons mundane. All that is in between and at both ends have made my life. Within these pages, an archaeology cleared of dust and fear, I talk about this life. It is the archaeology of a culture of one.

Interviews

An Interview with Dawn Prince-Hughes, author of Songs of the Gorilla Nation
You were not diagnosed with Asperger's Syndrome until you were in your mid-thirties. In the years since your diagnosis and during your work to educate people about the condition, have you noticed an increase in the number of adults diagnosed with Asperger's Syndrome?


Yes. There is a definite increase in the number of adult diagnoses of Asperger's and high-functioning autism (which may or may not be the same phenomenon, an area of intense debate). I believe this is because the public and professionals are becoming better educated about the autism spectrum. We have to remember that the diagnosis of Asperger's Syndrome only became available in the United States in 1994, when it was included in the DSM. I think the learning curve has been steep, and that people are becoming educated about the dis/order because of the dramatic rise of autism in children. Obviously there are positive and negative sides to this: that the public is quickly learning about Asperger's is wonderful; the fact that there is an epidemic of autism — which may be a signal that the environment is increasingly polluted, etc. — is obviously not.

When do you feel adults should seek help from a professional, either for a diagnosis of Asperger's Syndrome for themselves or a loved one?


I can't stress enough the importance of getting support as soon as possible. I was on the verge of losing my relationship when I finally sought an official diagnosis — and before that my dis/order had negatively impacted every relationship I had ever had and taken a long, hard toll on me.Secondary psychological problems very often plague those who try to manage this kind of dis/ability by themselves. For many with autism/Asperger's, it is as simple as getting a name for it, finding some simple strategies to help one cope, and finally knowing what you can and can't change and how to explain yourself to others. The goal isn't to become normal — and that is an important point — but to maximize your potential.

What advice do you give to families who know someone, either a friend or family member, who was recently diagnosed with Asperger's Syndrome?

Read. Read. Read. Read everything you can. I am emphatic about the importance of first-person accounts. People should read a wide selection, as each person with autism is unique. We all have a deep need to have our experiences validated, so I urge the person with autism and their loved ones to search out experiences that mirror their own, and share them within their relationships. I would also recommend that regardless how attractive a simple answer or any advice sounds coming from a professional, that those who deal with people on the spectrum should seek to use what works for the autistic person in their lives. Many family and friends, desperate for solutions, will try approaches that are ineffective and even harmful. Use trial and error and be flexible. That advice goes to the autistic person, who I know from experience often dislikes not having an iron-clad plan. Just try. It will help.


Many parents who find that their children are diagnosed with Asperger's will argue against medication for them. What's your view on medicating children?


This is an area I feel strongly about. Ultimately, I respect that families and individuals must do what works for them. From my point of view, though, years of anxiety and stress also produce potentially harmful chemicals in the body. We are, in the final analysis, big bags of chemicals, and our own bodies can poison us. I feel certain that that was true in my case. Medication has helped me tremendously and I wish I had had access to it as a child, when my muscles were tight all the time, I couldn't sleep, hallucinating from fatigue, and unable to screen out sensory input. The secondary benefits — increased sociability, better concentration, opening up in general — can often fall into place when the anxiety and over-stimulation has been attenuated. There can be much to gain.


How do you think your life would have been different if your Asperger's had been diagnosed earlier? Do you harbor regrets about this?

What an impossible question to answer! I have finally gotten over the "what ifs" that used to claw at my chest like an angry animal needing to escape, to be unleashed on the world. I have succeeded now and that has been its own redemption. I will always grieve for the small child and the young woman running away from the light, the noise, the taunts, the fists, my racing mind. Those scars don't heal and I don't want them to. I have been carved like a stone and that's what it has taken. I hold a hope, sweetly, that other children can become all they can be — something different than what I am now — by having a kinder experience. I am beautiful in what I am; I look at them and wish them a different kind of beauty.


You talk about the many challenges of Asperger's. Are there any gifts that you have as a result of Asperger's, for which you are grateful?

Asperger's to me is not a disorder, but a dis/order. There are positive and negative things about it. I believe that essentially Asperger's Syndrome is what makes me so absolutely sensitive to everything; I can feel everything in the world at every moment and with every breath. While this can be chaotic and even dizzying on a spiritual and pragmatic basis, it also never lets me forget that I am a part of everything -- it loves me hard, and I love it hard in return.
I believe everyone's characteristics are both healthy and debilitating: they are two sides of the human coin. My unique sensitivity has been diagnosed as a mental illness -- as has happened to so many people -- and, of course, this is helpful when one seeks support and understanding. However, there is a gift to all of our disabilities, those that are large and those that are small. I want people to know that about themselves. The very thing that limits you builds the wings on which you fly. It is all a matter of perspective and relies on broad connections with everything around you and inside you as well.

You wrote beautifully of your relationship with the gorillas at the zoo. It must have been difficult to choose which stories to share in the book! Do you have a favorite story/memory of your time with Congo? Are there other stories that you would like to share that you were unable to include in the book because of time or editorial limitations?

I had a wonderful experience recently, when I went to do some filming with the gorillas. I visited Congo's old group. There were new babies and everyone was happy — when I left it was right after his death and there was so much devastation. I had never met the new silverback man that had come to try to make the group a family again. He was there when I visited. He watched me for a long time from the back of the habitat. Then, in the slow, powerful way of men of his kind, he walked straight to me and put his huge forehead near mine through the viewing glass. He stood there with me like that for a moment and then walked quietly away. It made me cry. It was a perfect moment, and it meant so many things I can't write them all down here.

What is interesting to me as a writer, though, is that the moments I know are going to touch someone in print are not, perhaps, ultimately the most important ones. Those moments, the ones that went into a life with the gorillas, were full of a silent largeness, a feeling of a thing to big to feel in the moments of happening. And isn't that life, after all? When someone dies, you think of the poignant happenings at the funeral — it isn't until a month goes by that you know what you really miss...it's those moments full of empty being. Just being, together. That's how it is with Congo, still. The largeness of that grief and my inability to put it into a moment has taught me what love is.

SONGS OF THE GORILLA NATION discusses how finding the gorillas helped you find yourself, which in turn inspired you to do what you could to return your appreciation and love to the gorilla species. You devoted chapter 10 to several gorilla preservation projects and groups that you support. Where can readers go to learn more about these programs?

The internet is the best tool we have currently. All of the sites I mentioned in the book, if not what the reader is looking for, can lead them to still others that are and do it very quickly. It also allows you to combine interests to make supporting causes more interesting. For example, I was interested in helping refugees after reading Angelina Jolie's recent book detailing the problem as it exists all over the world. About the same time, I found out that I have Sudanese ancestry and I was able to go on-line and find a relief organization doing specific work in Sudan. It was a way to bring it all together in my life. Someone who reads my book and feels moved by it will undoubtedly have other passions in their lives — other animals, autism, other types of dis/ability, homeless issues — using the internet could help them connect all the areas of investment they feel.

What was the most rewarding part of writing SONGS OF THE GORILLA NATION? What was the most difficult? What were Tara's reactions to the book? Do you look forward to sharing the book with your son someday?


The most rewarding parts can be summed up by my experience of the meeting during which I sold the book to Random House. A room full of loving people told me that my life had been hard, that I was brave, and that I was a good and brave person. Each of those was things I needed to hear to reclaim my life. Writing the book — in that isolation so typical of writing — was rewarding; but just as I needed transcend the isolating aspects of my autism, so I needed to have people who cared about me look me in the eye and say those things. Since then, the care and support of people reaching out to me because of the book hasn't stopped. Now I can go on and do even better things.

Somehow, I always knew that would happen. I always felt like I was meant to do something meaningful in the world, to help other people, to even someday be embraced by the human world that I had for so long rejected. I can feel it coming and it is overwhelming. Tara's a little frightened of our lives becoming so public, but I think she has always known I would someday be doing this kind of thing, too. The bottom line for both of us is that we will do what we need to in order to make this a better world, and we are raising our son to feel the same kind of responsibility — and all the joy that can go along with it. As soon as I can, I am going to read him the book. It will be hard. I know that things that have happened to me will haunt him long after I am gone. But he must know it all. I am proud. I want to teach him by example that there is virtually nothing a person can do that can't be redeeming if they allow their soul to guide them as they struggle to do better.

What do you want readers to take with them after they read SONGS OF THE GORILLA NATION?


What they need the most.

You mentioned finishing two books while you were in Tacoma. Can you tell us more about these books? Have you considered publishing a volume of your poetry that you included in SONGS OF THE GORILLA NATION?

I have several small books out through independent and university presses. One is a novel , Adam, based on a true story about a man who volunteered to be a hermit in a Stonehenge replica in England during the Romantic Period, how he went crazy and became wild. Hmmmm. Almost autobiographical! Another I have out is an anthology of writing by autistic university students, called Aquamarine Blue 5, which is very enlightening in regard to their abilities. Also, I have a previous book about my experiences with gorillas out, with a foreword by Jane Goodall: Gorillas among Us: A Primate Ethnographer's Book of Days.

I'd love to do a book of poetry. In fact, I have a complete manuscript of a poetry anthology by autistic poets.

What are your working on now?
I am extremely excited about my newly finished manuscript, Teryk Brydanialun. It is about what it has been like as an autistic parent. There aren't many resources for parents with dis/abilities out there, and a real paucity when it comes to autism and parenting. This new manuscript chronicles my meeting a partner and getting committed, deciding to have children, how we made all the choices we had to make around that, and my experiences as we went through it.

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