Amy loves the movies. Amy also, as it happens, has Autism. But an interesting thing about Amy is that she is on a journey, the extent of which she is only beginning to become aware of. Amy’s journey is to find an understanding of both her Autism, and of her very self. And as we follow her adventures and reflections, her ups and downs, her insights and confusions, through the pages of this blog we also are on a quest for an understanding of both Autism, and of Amy herself as an individual. From one perspective, it seems that Autism and Amy are indeed two different things, that studying one is not the same thing as studying the other. But at the same time we also recognize that the two are intimately connected, and that it may well turn out that the two are difficult to fully differentiate, perhaps a little like separating salt from pepper once completely shaken together. But in spite of these challenges, let us journey together in search of an understanding of what it is like to be an individual living in this world with Autism.
It is, in many ways, the most exciting moment in her life. It is also a moment of profound anxiety. She feels as though she is awakening from the dream of childhood, a dream comprised by clouds of tender child- like oblivion. She once remarked about herself that she held a “child-like wonder in an adult brain.” Her adult brain, however, is what seems to condemn her to a state of hyper-anxiety, in which the pressure inside her head reminds her of the barriers that lie everywhere before her. Amy does, indeed, it would seem, have Autism.
Amy’s journey is, in large part, that she wants to understand her own thoughts, the workings of her mind. She wants to understand the way her mind interacts with the world around her. She wants to discover the landscape of her own self. She wants to be her own observer. She wants to be the observer and not always the observed. Still, it seems to Amy that her journey differs from that of others. She sometimes tries to remember when she first had that feeling of difference, a feeling that made it seem she was alone in the world. It is a feeling that has been her constant companion ever since. Amy has, then, for almost as long as she can remember, even as a child, felt that she was in some way “different”. But while she knew she felt different from everyone else around her, from all the other little girls as a child, and all the other women when she had become a lady, she did not understand the source of that difference to be Autism.
In a very limited sense, Amy is, in the pages that follow, a created character. Her experiences are, nonetheless, grounded in the real experiences and personal history of a high-functioning autistic individual. So while the portrayal of this autistic life of Amy’s is to a small degree impressionistic, its grounding in the day to day experience of an individual living on the autistic spectrum lifts the portrayal unequivocally out of the realm of fiction. The genre employed here to portray Amy’s life, then, is creative non-fiction.
We must also be careful to recognize, too, that there are distinct commonalities that exist among autistic individuals. There are distinct experiences that many autistic individuals share. We will need to be sensitive in our recognition of them as we go along our way. The question that intrigues us is, in part, how they become packaged in an individual life: Where does the individual meet her Autism? Where might we draw a line between the two? All of the distinct experiences, however, remain subject to interpretation. Indeed, what is crucial to note here is that the experiences and perspectives of any single autistic individual are subject to the difficulties of interpretation and the problem of subjectivity. Douglas Biklen makes this point in his book Autism and the Myth of the Person Alone (New York: New York University Press, 2005). There he explains that Autism is a “list of symptoms or behaviors or representations that can be studied and discussed, but it is not knowable as a truth. It must always be interpreted.” (p.3) He suggests, furthermore, that a personal account of an autistic person does not in and of itself make it “true”. (p. 5) Thus the experience of any given autistic person is not therefore “valid,” or an “essential” autistic experience.
This situation is further complicated by the problem of “labelling,” the difficulty of the identification and diagnosis of Autism itself. Indeed, the difficulties that present in the diagnosis of Autism magnify the problem of the identification of the “essential” autistic experience all the more. What is needed, then, to explore the autistic experience is both sensitivity to the individual predicament and a clear understanding of the limitations of our exploration. We must, moreover, approach all individuals who self-identify as autistic with a generous and inclusive spirit. They each have their stories to tell, stories that are important, stories that teach all of us something about what it means to live with Autism, about what it means to be human in this context. Autism is, at least at this moment in its history, not something which is identifiable by means of a blood test, or even neuroimaging or other diagnostic test. Its presentations are grounded in the complexities of the expressions of the mind, a mind that, even in the most general of terms, science is only beginning to understand. Still, listening attentively can be a powerful tool. Listening can grasp the nuances and silences of those who pause in describing their experiences. It can become a passageway to an entire interior world which privileges understanding over silence and ignorance. We need to listen carefully to Amy’s own voice as she tells her story.
From this perspective, given that Autism is inextricably tied to notions of self and identity, we must confront the problem of the irreducibility of the self to the measurements of a scientifically inclined world. The MRI images of an autistic mind may well appear different from that of the non-autistic mind. But the interactions between the autistic mind and the world around them do not occur in the theatre of the medical scanner. Autism may be calling for an innovative scientific and sociological methodology for its investigation. Yet, the primary problem is that we are dealing with a fundamentally subjective enterprise. To add yet another layer of interpretative challenge, we must confront the subjectivity of the autistic experience from within our own subjectivities. It remains, however, at least for now, our only pathway in.
Autism, even by its etymology, is self-referential. The word “Autism” is derived from the Latin word autismus. While its etymology might make the word seem old, the word is in fact a modern construction following from the Greek word “auto” meaning self. The word “Autism” was coined by Eugen Bleuler in the early 1910s to describe his patients who seemed to go into states of detachment from the world around them. It was later taken up by Leo Kanner in the 1940s who described children whose detachment he found to be more enduring and less episodic than had Bleuler (Gil Eyal et al, The Autism Matrix: The Social Origins of the Autism Epidemic (Malden, MA: Polity Press, 2010) p. 213). Thus by necessity the connection between the self and Autism is of fundamental interest here. But the modernity of the word itself also is of special interest and invites investigation.
In that the autistic experience at the same time holds forth commonalities and specificities, that it has elements of the individual contained within it, but also holds elements of the common experiences and characteristics of the group, suggests that the autistic mind is not a china doll pulled from a dusty shelf crowded with other dolls of the same design and size. That expressions of Autism are described here as unique, that they are presented as the meeting of an autistic reality with the yearnings and characteristics of an individuated and autonomous self, a self which is self-directing and not simply the product of social forces, and, in this case, is not simply the product of autism itself, all suggests an optimism on the nature of Autism and the life of an individual living with it. This optimism, admittedly, is not shared by all. Some see autistic individuals as more pre-determined by the autistic process and therefore enclosed upon themselves, as if a flower turned inward, so that it alone can perceive its own beauty.
Any given autistic life, however, just as any life at all, is distinct and worthy of being described and understood on its own terms. What we hope is, that by this depiction of an autistic life it will lead the way to an understanding not only of a single individual living with Autism, however important and beautiful such a depiction that might be in its own right, but also to an understanding of the possibilities that attend all individuals living with autism, of how their lives can be seen as so many drops of rain scattered on a sunlit lawn after a summer’s rain, reflecting and refracting rays of sunlight. True, commonalities exist among those lives. But individual beauties attend them too. We hope that in investigating a single autistic life there might be even inspiration to understand and celebrate, yes live, the autistic life to the full, as challenges and obstacles give way to opportunities, regardless of where that individual life happens to live along the continuum of the autistic spectrum. Let our journey represent one small effort to dispel the clouds of mystery and prejudice about Autism. Let it be one means by which Autism comes to find recognition, acceptance and celebration as one aspect of the full diversity contained within the human condition. Let our journey illustrate the beauty and power that arise when tolerance and acceptance offer a theatre for the performance of a multiplicity of expressions of the autistic mind. For now, we must let Amy lead the way. Let us proceed in this journey, then, with both sensitivity and deep respect, recognizing the priceless importance of an individual life and the generosity of spirit that welcomes us and allows our scrutiny.
We have come to love Amy. We hope you do too.