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.
Excerpt. © Reprinted by permission. All rights reserved.
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.
