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Biology 202, Spring 2005
Third Web Papers
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Different is Not Wrong: Learning to Listen to People With Autism


Joanna Scott

Autism is a neurodevelopmental disorder that emerges early in life, and can be detected two to four years after birth. It is characterized by deficits in social interactions, communication skills, and imagination. Prior to psychology's adaptation to a biomedical model, the widely held belief was that autism resulted from bad parenting—the mother in particular was blamed for being too cold with her child. Although the scientific community has largely moved away from such a stance, the current conceptualization of the disorder is still imperfect. Autism is portrayed in a very narrow sense and defined by its divergence from 'normalcy'. The danger in labeling a pattern of behavior as abnormal is that the person themselves is labeled abnormal, a term which our culture treats with disdain. Rather than being viewed for who they are, they are viewed for who they are not; rather than understood as expressing themselves differently, they are dismissed as being incapable of expression and lacking self-awareness. These assumptions are implicit in the now-popular theory of mind deficit account and have influenced the clinical treatment of autistic individuals. I propose we look at autism in a different light—one that has respect and open-mindedness at its foundation.

Autism's classification as a neurodevelopmental disorder rests on several points. Firstly, autism is manifested similarly in children and adults. There is a continuity of symptoms throughout developmental stages. People with autism frequently display other symptoms or disorders with a recognized genetic or neurological basis, such as seizure, Fragile X syndrome, or tuberous sclerosis (7). The forebrain limbic system has been implicated in the etiology of the disorder. Specifically, there is interference with the prenatal development of the amygdala, hippocampus, and the cerebellum. It becomes evident during a phase of synaptic reorganization that usually occurs in the first two years of life (1). The brain structures that appear to be affected in autism correlate with much of the symptomology. The hippocampus is responsible for short-term memory functions, while the cerebellum regulates motor activity and coordination (7). Autism has been described as an abnormality in socio-emotional development. The amygdala is largely involved in emotional behavior and tends to show smaller neuronal size and increased cell density in autistics (1). Many with autism struggle with making accurate social judgments and this may be the result of fetal damage to the amygdala. Genetics plays an important role in the etiology of autism. There is an increased incidence of the disorder among families, compared to the general population. The growth dysregulaton hypothesis proposes a genetic defect in brain growth factors in autism.

The term autism was introduced in 1943, by Dr. Leo Kanner. The classic Kanner's autism is today part of a spectrum of disorders known as Pervasive Developmental Disorder (PDD) or as Autism Spectrum Disorders (ASD). There are currently five disorders on the ASD, but each is characterized by varying degrees of impairments in socio-emotional development. I will use the term autism to refer to Kanner's early infantile autism, but much of this discussion is applicable to all moderate- to low-functioning ASD individuals. Beginning in early childhood, autistics show decreased levels of eye contact and joint attention. They are described as having an "empty gaze" and "withdrawing into their own world" (7). This so-called aloofness also applies to their play, which is less spontaneous and imaginative compared to their peers. Autistic children tend to have a limited range of interests that become obsessions. For example, some children may spend hours lining up toys or memorizing the TV guide. These repetitive behaviors, or stereotypies, correspond with an increased need for sameness. Threats to their routine or to their concept of order are anxiety-provoking. Some autistic children will notice if one thing in a room has been moved and become very upset. Those with severe forms of this disorder may lack language completely; others show abnormalities in language, such as pronoun reversals, inappropriate use of words and facial expressions, ignorance of social cues, and abrupt changes in topic.

Another common feature of autism is perturbation in sensory perception. This manifests itself as both hyposensitivty and hypersensitivy to various stimuli. Such sensory-motor, perceptual, and autonomic differences occurs throughout ASD, including high-functioning individuals. McGeer included the descriptions of such experiences from a person with Asperger's Disorder (a higher-functioning ASD) (6). Here is one account from G. Gerland: "I always had had, as long as I could remember, a great fear of jewelry. If I was made to touch jewelry...my stomach turned over." T. Grandin wrote that he was "scared to death of balloons popping" and that "[his] roommate's hair dryer sounded like a jet plane taking off". The writers describe not only the intensity of the sensory experience, but also the intensity of emotion that accompanies it. Grandin further illustrates the horror these perceptions could bring:

"I hated stiff things, satiny things, scratchy things,
things that fit metoo tightly. Thinking about them,
imagining them, visualizing them...goose bumps and chill
and a general sense of unease would follow. I routinely
stripped off everything I had on even if we were in a public
place...I guess I thought I could get rid of them forever!"

Everyday sounds can be so unpleasant as to make them afraid and physically unwell. Not all sensations are as unbearable. For example, Grandin, "loved to chew scratchy and gritty textures," like Emory boards, the strip from a match book, and sugar packets. The descriptions of Gerland and Grandin are particularly striking in their detail and the realness of these experiences to them. Despite their eloquence and insight, accounts from individuals with any autistic disorder are often dismissed by theory of mind (TOM) proponents as "a symptom of a distorted...self-consciousness" (3).

The theory of mind deficit account has become a hot topic of research and one of the dominant theories of autism. Theory of mind is proposed as a neuro-cognitive mechanism which allows us to attribute mental states and from this, predict behavior. This includes our ability to understand our own mental states, as well as those of people around us. Another important role of the theory of mind ability is to distinguish between a mental representation of the physical world and the representation of beliefs about the physical world (3). This model distinguishes a first-order representation from a second-order representation. It contends we have mental representations of reality (first-order) and these are separate and distinct from our beliefs about the reality (second-order). Proponents of theory of mind argue that people with autism have only a first-order representation—that autism is a lack of introspection about our perceptions of reality. They refer to this deficit as being "mind blind". Frith and Happé posed the question, "what would a mind without introspective awareness be like" and then came up with several suggestions. They first speculated that behaviors such as inflexibility and sensory responses result from this inability to reflect on their environmental experiences. Most critically, the authors state that a person with autism is "without self-awareness" and "lacks self-consciousness" and is therefore "unable to distinguish between her own willed and voluntary actions" (3)). Such loaded terms as consciousness and self-awareness are problematic in themselves. Although the TOM theory as it stands does not deny that autistics have mental states, it does hold that people with autism are unable to reflect at all upon those mental states. This calls into question the very abilities which are central to the idea of being human, which I believe is misleading and unfair. This view of autism is not only too general, but is also laden with judgment.

We might first question how people with an ASD can write so vividly and so insightfully about their experiences if they lack self-awareness. Frith and Happé answered this by saying that expressive autistics represent a small subset of the diagnosed population and even then, "arrive at a theory of other mind by a slow and painstaking learning process" (3). The mailing list of Autism Network International provides a space for people with autism and related disorders to share opinions on a number of topics, one of which included theory of mind (2). Their comments reflect frustration at not being understood and at the assumptions made by what they call 'NTs' or neurotypical adults. One person asks, "if a lack of theory of mind equals the belief that everyone thinks the way you do" then this applies to how many NTs treat people who are different, like people with autism. This person goes on to say that "problems are caused by the fact that NTs assume [social] knowledge is universal" and that "people can be very nasty" and "automatically assume I'm wrong without bothering to understand what I did". During this discussion, a woman named Elsa came up with this hypothesis of theory of mind:

It is logical that people who think differently will have trouble
understanding other people's thoughts or actions. It seems to me
that this is a matter about whether ToM is valid in a particular
situation or not, not about whether or not someone has it. In which
case ToM works between NT's, and it works between AC's but it fails
when AC's and NT's interact together.

Such comments demonstrate that this person is not only aware of her experience, but also aware that not everyone shares this experience. Elsa identifies the problem as being a failure to recognize differences between people. This is a problem of our culture as a whole, and one that needs to be addressed in both theory and treatment plans for people with autism.

The primary modes of treatment for autism involve behavioral training to help such individuals function in society. At first, this goal seems straightforward and indeed helpful, but there are hidden costs. Jasmine Lee O'Neill is a mute autistic who has written about her experiences. Self-stimulatory behaviors, like flapping and rocking, are common stereotypies of autism. Many treatments focus on controlling and eliminating these behaviors. Jasmine firmly believed it is wrong to try to take away this simple pleasure from autistics just because it is embarrassing and irritating to most of society. An accomplished individual herself, she admits having many self-stimulatory behaviors which she loves and enjoys. They provide comfort and relaxation and therefore "must be allowed to be part of the whole person" (6). It is a conflict for therapists who recognize the realities of the society they are trying to get their patients to function in and be accepted in. One method that is used in some special education programs is that of self-determination. Self-determination is "acting as the primary causal agent in one's life" and making choices and decisions "free from undue external interference" (5). This focuses on the individuals' preferences and interests, not what we would make them. In the bigger picture, it may be more important to foster a positive relationship with the patient and to focus on the issues that are most important, such as interpersonal relationships. While speech therapy is often an integral part of the treatment, it has not been found to be effect for moderate to low functioning autistics (8). Therapies which foster emotional engagement and joint attention may be a more effective method. This requires openness to different forms of communication—through music, art, collaborative play, or imitation. Giving people with autism a basis for expression and interaction will in turn foster cognitive abilities for understanding others and understanding themselves. How can theory of mind for others develop if the child is not given the opportunity to interact with others?

The TOM theory of autism is one example of underlying tones of condescension in the literature. Autism has been defined as a "failure in affective development" and "failure of social functioning" (4). Such a description implies that people with autism are different in a wrong and inferior way. Another stated that "children with autism are unable to grasp the meaning of friendship" (1) In a study on the perceptions of social relationships in autistic children, Bauminger, Shulman, & Agum found that these children had lower ratings for intimacy and companionship with their friends, but rated their overall closeness to friends similarly to neurotypical children. The authors went on to say that this likely "represents a desired rather than an actual closeness in their friendship" (1). The assumption is that the children must be wrong about their perceptions of closeness as they lack understanding of friendship. The problem of tolerance is confounded by the relation between autism and mental retardation. Approximately 2/3rds of autistics have an IQ below 70, which is the cutoff for mental retardation (6). People with learning disabilities, or a label of mentally handicapped also suffer from stigma. Autism falls into such a group of individuals, who are frequently disregarded and disrespected.

I did not realize such implications were present in the field until I started reading some of the literature; I also did not realize how angry it would make me. I have been fortunate in the past semester to have had the opportunity to work with a group of autistic preschoolers. I teach in a classroom that meets three times a week, and have gotten to both interact with and see the progress in six children who do not fit these narrow views of the disorder. Frith and Happé believed that autistics view other people as inanimate objects, as just another source of sensory stimulation. In this way, others would seem to have little to no significant meaning. But I have seen these children react to their mothers, to myself and the other teachers, and to one another. They recognize people who they interact with on a regular basis and respond to us. While most of these kids are low- to non-verbal, they do interact with other people. They have a wider range of non-verbal expression than is assumed. Their faces light up, they laugh, they clap, they sometimes pout—and in an appropriate context. At first, I did not know how to interact with them; I felt awkward and doubted that I could relate to them without language. I made an incorrect assumption. Yes, the children have certain limitations and the program works on strengthening language skills as well as eye contact, turn taking, following commands, and appropriate play. These limitations are not impossibilities or inferiorities—they are differences. I needed to learn too, to be more open to their individual style of interacting and to not make assumptions about what they can and cannot do. Another tendency in the literature is to lump autistics together in characterizing the disorder. The children I have worked with have their own personalities and differ from each other as much as I do from my classmates. Some of the children are very demonstrative with their affection; others open more during one-on-one interactions, and so on. Like the rest of the population, each child has their own strengths and weaknesses. Emma loves to sing, Christian loves to start knock-knock jokes, and Luke likes anything related to trains, planes, and automobiles!

My experiences in this classroom have made me appreciate these differences and feel strongly that above all, what any person needs is respect and understanding. As a culture, we strive for normality and judge anything else by that standard. Differences should be appreciated, and valued for what they are. We need to start considering each person in their own right, not just as an autistic person or a person who detracts from normal in such and such a way. We need learn to listen to who these people are as just that: people.


References

1) Bauminger, N., Shulman, C., & Agam, G. (2004). The link between perceptions of self and of social relationships in high-functioning children with autism. Journal of Developmental and Physical Disabilities, 16(2): 193-214. Article Online

2) Autism Network International, Theory of Mind from an Autistic Perspective

3) Frith, U. & Happé, F. (1999). Theory of mind and self-consciousness: What is it like to be autistic? Mind and Language, 14(1): 1-22.

4) Harris, J. C. (2003). Social neuroscience, empathy, brain integration, and neurodevelopmental disorders. Physiology and Behavior, 79(3): 525-531. Article Online

5) Held, M. F, Thoma, C. A., & Thomas, K. The John Jones Show: How one teacher facilitated self-determined transition planning for a young man with autism. Focus on Autism and Other Developmental Disabilities, 19(3): 177-188. Article Online

6) McGeer, V. (2004). Autstic self-awareness. Philosophy, Psychiatry, and Psychology,11(3): 235-251. Article Online

7) Autism Spectrum Disorders, NIMH Information on ASD

8) Travarthen, C. & Aitken, K. J. (2001). Infant intersubjectivity: Research, theory, and clinical applications. Journal of Child Psychology and Psychiatry, 42(1): 3-48. Article Online


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