While I was trapped between the windows, it was almost impossible to communicate through the glass. Being autistic is like being trapped like this. The windows symbolized my feelings of disconnection from other people and helped me cope with the isolation.
—Temple Grandin, Thinking in Pictures and Other Reports from My Life with Autism
This isolation was not from being left to my own devices. It stemmed from the isolation of my inner world and only the unthreatening nature of privacy and space would inspire the courage to explore the world and get out of my world under glass step by step.
—Donna Williams, Nobody Nowhere: The Remarkable Autobiography of an Autistic Girl
Autistic people do not find it easy to understand the world in ways other people do. And others often find them “strange” and hard to understand. Interpreting what they do is the first challenge their condition poses to psychiatric efforts to help them.
The diagnosis of autism is based on patterns of behavior rather than on genetic or other biological evidence. Large variations in the severity of the problems show that an all-or-none diagnosis of “autism” would cover a very wide band indeed. This made it natural to move to the dimension approach implied by “the autistic spectrum.” It is widely accepted that this in turn is too simple and that there is at least an “autistic triad.”1 The three dimensions of the triad are (1) impaired social capacities; (2) impaired capacities for communication; and (3) limited imagination. The weak social capacities and impaired communication include difficulties with conversation, with sharing interests, emotions, and responses, and with eye contact and body language. Autistic people might make no use of gestures or facial expressions. They find it hard to relate to people and make friends. They may lack interest in people.
Limited imagination is also shown in rigidity or repetition: always taking the same routes or eating the same food, repeating speech or movements, or fixation on a narrow set of interests. People with autism can also find it hard to interpret other people’s mental states. As children they are not good at imaginative play. But “limited imagination” does not mean they have no inner imaginative life.2 In particular, other people may too readily see an autistic person’s difficulties with interpretation as indicating a lack of empathy. The view from inside may be different: “I ask you, those of you who are with us all day, not to stress yourselves out because of us. When you do this, it feels as if you’re denying any value at all that our lives may have … The hardest ordeal for us is the idea that we are causing grief for other people … the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable.”3
Research suggests there is little overlap in the genes associated with the three dimensions, which are combined in different proportions in different persons with autism.4 As the picture grows more complicated, some have suggested that we should think, not of autism, but of autisms, and replace the autistic spectrum by the autistic landscape.
The words we want to say and the words we can say don’t always match that well … When there’s a gap between what I’m thinking and what I’m saying, it’s because the words coming out of my mouth are the only ones I can access at that time.
—Naoki Higashida, The Reason I Jump
Though I spoke with the words of “the world,” my gestures were and remain the more important language of “my world.”
—Donna Williams, Nobody Nowhere
The incapacity and distress severe autism imposes on those who have it can be very great. They may seem to take no notice of other people. They may be largely or entirely unable to use spoken language. They may have frequent screaming fits, or for long periods make anxious-sounding noise. Patterns of self-injury include slapping themselves, pulling their hair, or continuously banging their heads.
This kind of behavior seems hard to interpret at the “human” level of beliefs, desires, and intentions. At first sight it may seem more plausible to interpret it, as was once standard, in terms of some neurological breakdown causing unmotivated bodily activity. The screaming fits, the noises, the slapping and head-banging can seem to be below the level of intelligible actions.
But there are reasons not to give up on interpretation too soon. Jim Sinclair gives some in an open letter to parents of autistic children:
You try to relate as parent to child, using your own understanding of normal children, your own experiences and intuitions about relationships. And the child doesn’t respond in any way you can recognize as being part of that system. That does not mean that the child is incapable of relating. It only means you’re assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share … It takes more work to communicate with someone whose native language isn’t yours … You’re going to have to learn to back up to levels more basic than you’ve probably thought about before, to translate, and to check to make sure your translations are understood. You’re going to have to … let your child teach you a little of her language, guide you a little way into his world … Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined.5
The essential social problem in autistic spectrum conditions is not one of avoidance of, or lack of interest in, interacting with others … but inability to grasp the tacit rules that govern social interaction intuitively, or to “read” the facial expression, tone of voice and body language of others. Often, our own body language is odd and we do not express emotions in the same way as others. (I remember as a child that I had to teach myself how to do a “social smile” while looking in a mirror.)
—Clare Sainsbury, The Martian in the Playground
The “strangeness” of many individuals who inhabit the autistic landscape is exacerbated by this limited grasp of the shared grammar of reading each other. Some people with less severe versions of autism, and others who have emerged from the more severe versions, have described this from the inside. They describe the autistic inner life to be interpreted and give clues about how to do it. Like any group, autistic people vary a lot in their inner lives, so there may be different “dialects” in the autistic language to be interpreted. Temple Grandin says that because autistic people often think more visually than verbally, the meaning they give to words may depend heavily on individual associations: “For example, ‘French toast’ may mean happy if the child was happy while eating it.” And for one child “partly heard song” meant “I don’t know.”6
Donna Williams had such severe childhood autism that some thought she was psychotic.7 She is now a successful author, artist, and singer, but she remembers her limited powers of interpretation in childhood. She decided not to sing in front of other people, but “I didn’t realize for many years that they could still hear me even if I couldn’t see them.”8 She could read, but could not grasp what novels were about: “It was as though the meaning got lost in the jumble of trivial words.”9 Once in class she sat next to a girl with hair in a plait: “I ran my hand down her plait. She looked around at me and I was frightened by the way that her face was joined to her hair. I had wanted to touch her hair, not her.”10 And more generally: “I could comprehend the actions of another person, particularly if they were extreme, but I had trouble coping with ‘whole people’—their motivations and expectations, particularly to do with giving and receiving.”11
As a reaction to the struggle to interpret her experience of the world, she developed defenses. Perhaps autistic rigidity and repetition are too readily seen as reflecting only a lack of imagination. Donna Williams’s repetitious concern with order and system was a defense: “The constant change of most things never seemed to give me any chance to prepare myself for them. Because of this I found pleasure and comfort in doing the same things over and over again.”12 Part of the difficulty of interpreting change seemed to come from its speed. Her defenses against this must have seemed odd from outside: “One of the ways of making things seem to slow down was to blink or to turn the lights on and off really fast.”13
One of the biggest misunderstandings you have about us is your belief that our feelings aren’t as subtle and complex as yours. Because how we behave can appear so childish in your eyes, you tend to assume that we’re childish on the inside, too. But of course, we experience the same emotions that you do. And because people with Autism aren’t skilful talkers, we may in fact be even more sensitive than you are. Stuck here inside these unresponsive bodies of ours, with feelings we can’t properly express, it’s always a struggle just to survive.
—Naoki Higashida, The Reason I Jump
Temple Grandin is an autistic woman whose thinking is overwhelmingly visual. She says words are her second language. Her work includes designing equipment for dipping cattle without making them panic. Other equipment she devises might use computer modeling, but she can work it out by “running three-dimensional visual simulations” in her imagination, testing designs by imagining cattle walking through them. “It is like seeing it on a videotape in my mind. I can view it from any angle, placing myself above or below the equipment and rotating it at the same time. I don’t need a fancy graphics programme that can produce three-dimensional design simulations. I can do it better and faster in my head.”14
But communication can be hard for people who have words as only their second language. Learning to express themselves to others can be painfully slow. “To talk, I first had to think the words, almost write them in my head, usually twice if I was to say a longish sentence … The difficulty in linking thoughts and voice made it hard to keep up if more than two people were involved in a conversation. By the time I had thought out what I was going to say, and directed my voice to say it, the opportunity to say anything had usually passed.”15
From outside, the reluctance of some autistic people to be touched can seem mysterious. Naoki Higashida says how it seems to him from inside: “For a person with autism, being touched by someone else means that the toucher is exercising control over a body, which even its owner can’t properly control. It’s as if we lose who we are … There’s also the dread that by being touched our thoughts will become visible. And if that happened, the other person would really start worrying about us. You see? We put up a barricade around ourselves to keep people out.”16
Donna Williams could also use her defenses against other people and what she saw as intrusiveness. At a dancing class, instructions were called out, and someone might try to guide her. “Helpful invasive arms, instructing, interfering. Me looking at my feet. The walls were going up. The music was a blur. There was too much turmoil going on around me, invading my space and invading my mind. With clenched fists, I stamped my foot and spat several times upon the floor.”17
The feeling of being invaded was linked to fear of exposing her own personality. Touching on anything personal in her writing for English classes, she would write obliquely, almost in code. Her drawings were often symbolic, “as anything too personal could never be seen unless I could create some sort of distance.”18 When she needed to ask a question, she again would do so obliquely, not looking directly at the person and then seeming to ignore the reply. “It took an incredible degree of courage to seek out an audience and talk about something I was interested in. To me, this made me painfully vulnerable. I was expressing something about my own personality and identity. The fear it inspired would simply not have allowed me to express anything personal in any other way.”19
Imaginary friends were easier. “They were far more magical, reliable and predictable and real than other children, and they came with guarantees. It was a world of my own creation where I didn’t need to control myself or the objects, animals and nature, which were simply being in my presence. I had two other friends who did not belong to this physical world: the wisps, and a pair of green eyes which hid under my bed, named Willie.” Imaginary friends could become a defensive mask: “As with anything I became close to, I would try to lose myself within it. I took to sleeping under the bed and I became Willie. By this time I was three years old. Willie became the self I directed at the outside world, complete with hateful glaring eyes, a pinched-up mouth, rigid corpse-like stance and clenched fists.”20
Masking her inner self against exposure could make Donna Williams feel that she too was getting out of touch with it: “I see that girl in the mirror, looking back at me. / I see her thinking I am crazy, for believing I am free. / Yet I can see it in her eyes that as I am staring, / She’s trying to understand that I am not lying, / I am just trying to find my way back home to me.”21
Autistic people’s accounts from the inside have made these aspects of their world available. Their difficulties in interpretation and expression, and their anxieties and defenses, are the context for interpreting their “language.” Sometimes they explain what they are trying to cope with or express with their “strangeness.”
Donna Williams mentions difficulty with depth perception. Dropping things repetitively makes the dimension of depth seem more real, as does rocking from one foot to another. But there is also an emotional side. Repetitive dropping expresses the freedom to let good emotions flow in and out of herself without pain or fear. Rocking from one foot to another can feel like preparing to leap over the darkness between herself and the world. The rhythm and jolting of jumping seems to help the jumble in her brain to sort itself out. Clapping can signal either pleasure or the end of something. Laughing releases tension or anxiety. Head-banging can help with tension: thudding rhythms in her head calm her down. Looking directly at things can make it hard for her to see their significance, but “staring past them” is relaxing and makes them easier to take in.22
What seems strangely antisocial becomes more intelligible in the context of exposure anxiety and its related worries about identity. Sometimes she would sit for a long time in her room absorbed in the wallpaper patterns. “When I needed to go to the toilet I’d get up and take a few steps across the floor before going on the purple carpet I hated so much. As time went by I became more and more aware of myself through doing this. I’d watch a puddle form and giggle as it seeped into the precious carpet. Symbolically this was ‘my world’ with a ‘me’ in it. The more I covered that carpet, the more of a ‘me’ in the world there was. The smell didn’t worry me. The smell belonged to me and closed out other things. By the time my mother discovered what I’d done, my purpose for doing this had already been achieved. I’d called myself back out of my body into my room—a room I’d made sure belonged to me.”23
Accounts from inside, by making autism more intelligible, narrow the distance between autistic and nonautistic life.
Ian Hacking has argued that it may be wrong to think of these individuals as describing autism “from the inside.” He invites us to read these texts “not as describing well-defined experience, but as creating ways to express experiences,” and suggests that they may be “less telling what it is like to be autistic than constituting it.”24 The contrast between telling what it is like and constituting it may be misleading. Could the accounts not be doing both? Perhaps all of us, in finding words to describe to others our often blurry and amorphous inner lives, impose on them interpretations that change our own experiences of those lives. Telling and constituting interact with each other, whether we have autism or not.
Hacking’s objection to talking about things “inside the mind” is that it carries the suggestion that looking inside the mind is like trying to see into a closed box. So from outside we can know what someone thinks, feels, or intends only by inference from their behavior. He follows Ludwig Wittgenstein in being skeptical about the need for inference. Just as we often see, rather than infer, what a painting depicts, so we often see that someone is angry or intends to answer the telephone.
Wittgenstein was influenced by Wolfgang Kohler, who believed we see a whole gestalt, not separate items to be put together like a jigsaw. Kohler said that a friend looking at my face will see me tense up when I notice a snake. He is quite right that the friend will not have to work out an inference: “There is a snake. Now it is entering his visual field. The expression on his face has suddenly changed. Perhaps I can infer that he has undergone a change of psychological state.” We do not have the innocent eye that would make such a labor of it. Instead we have all the mechanisms underlying the grammar of facial interpretation. We are not conscious of them, but their functioning lets us to see it intuitively.
None of this means that the metaphor, if it is a metaphor, of “inside” is misleading. Often we can read in a face anger, inner guilt, or love. But not always. Proust was right to be uncertain about how Françoise felt about him. And most people can’t just see how an autistic person behaving strangely is feeling inside. Autistic grammar of expression and of interpretation is different from ours, and not intuitive to us.
If we see a girl making a puddle and giggling as the wet seeps into the carpet, the interpretation does not just leap out at us. Does this mean that the autobiographical account is not “telling what it is like to be autistic” but instead “constituting” it? When Donna Williams later wrote, “The more I covered that carpet, the more of a ‘me’ in the world there was,” she is using metaphorical language that the rest of us might use. It seems unnecessarily skeptical to doubt that she is expressing a feeling we understand.
Temple Grandin once said, “Much of the time I feel like an anthropologist on Mars.”25 Some people on the autistic spectrum express the thought the other way around. Clare Sainsbury’s book about her schooldays, Martian in the Playground, reflects the fact that (what she later discovered to be) Asperger’s syndrome made her feel put on this planet by mistake. If we were visited by real Martians, we would expect their language to be difficult for us and would make great efforts to interpret them. The rest of us formerly did not realize that people with autism were in this way Martians, whose strange behavior was a language we could try to interpret.
It goes without saying that those autistic people who feel like Martians are not aliens. (Homo sum, humani nihil a me alienum puto.) Now that some of the “Martians” have managed to break through and tell us a bit about their thought and language, there is a real hope that we can start to map its outlines, its dialects, and its idiosyncratic personal differences. There may still be a long way to go, but the fundamental change has taken place. What seemed too strange to have any meaning is now potentially open to interpretation and to all that may flow from that. It is a model to bear in mind when approaching other “unintelligible” psychiatric conditions.