The Bizarre Actions of Different People - Case Study Example

Different, not Defective or Diseased Section Number of Different, not Defective or Diseased Purpose of the Paper The unprecedented developments in Information and Communication Technology (ICT) in the last decade have opened up avenues of gaining new insight into hitherto unexplained or complicated phenomena. So has been the case with Autism. Amanda Baggs, a 27-year old autistic created a sensation by uploading a YouTube post on the Internet in which she tells the world “in vivid and articulate terms what’s going on inside her head as she carries out these seemingly bizarre actions” (Wolman, 2008). The ‘bizarre actions’ refer to what is taken to be common but abnormal repetitive autistic behaviour such as closing and opening a drawer, drawing a finger continuously over the keyboard of a musical instrument or pressing ones face against the pages of a book. Autistic people like Amanda are making a statement that they are perfect as they are, and the world at large should accept them for what they are and not categorize them as odd, defective, abnormal or diseased for what they are not. This has resulted in the adoption of a new line of approach to autism by researchers in the field. “The condition, they say, shouldn’t be thought of as a disease to be eradicated. It may be that the autistic brain is not defective but simply different—an example of the variety of human development” (Wolman, 2008). This paper looks into various aspects of autism research to reinforce the belief that autism is just another way of looking at and understanding the world – that autistic people are not defective or diseased but just different from a larger majority of people in the world. Autism as we know it “Autism Spectrum Disorders refer to a complex group of related disorders marked by impaired communication and socialization and by a limited (and often unusual) range of interests. Although sometimes not diagnosed until school age, Autism Spectrum Disorders develop early in life and are life-long conditions with implications for education, social development, and community adjustment” (Ruble & Gallagher, 2004). Though autism can now be diagnosed even before three years of age of the autistic, some types of autism can be confirmed only in late childhood or in adulthood (Ricketts, 2008). What is termed as Autism Spectrum Disorders essentially comprise three conditions based on the degree of severity and range of affected faculty: Autistic Disorder, Asperger’s Disorder and Pervasive Development Disorder Not Otherwise Specified (PDD-NOS). Children who have autism face problems in all the three core areas viz. socialization, communication and restricted patterns of behaviour and interests. Those with Asperger’s have problems only in socialization and restricted patterns of interests; and those with PDD-NOS have problems in socialization and either of the two other areas of communication or restricted patterns of behaviour and interests. For the purpose of this paper, the term ‘autism’ will refer to the three combined conditions referred to as Autism Spectrum Disorders. Characteristics of Autism Spectrum Disorders can be broadly classified into four categories: cognitive, social skills, communication, organization or self direction. Autistic children manifest uncoordinated or uneven development of cognitive skills, and lag behind other children comparatively in processing verbal and visual information. Their relative strength in processing visual versus verbal information is not balanced. Socially, autistics find difficulties in comprehending social rules and norms such as those that involve sharing participating in groups in turns, they may fail to understand or read the feelings of others, look at things from the perspective of others, or may even lack the ability to initiate and maintain interaction and conversation with other people. In communication, autistic children may have problems responding to fast-paced verbal information, may not understand commands that are top be carried out in more than one step, their understanding of verbal information could be inconsistent and the verbal information, especially if it is presented for the first time, may have to be repeated for proper comprehension. From the point of view of organization or self direction, autistics have a hard time in blocking distractions from routine daily occurrences, they are unable to initiate activities or complete work independently, face difficulties in organizing their work and time schedule and transiting from one work to another i.e. shifting the focus of their attention. Autistic persons find it difficult to concentrate in doing more than one thing simultaneously. Resent surveys have found the prevalence of autism to be considerably high. In the United States, Autism alone affects as many as a 1 out of 500 children, while Autism Spectrum Disorders (Autism with Asperger’s and PDD-NOS) affects almost 1 out of every 160 children (Ruble & Gallagher, 2004). The most important thing about autism is that it is said to be incurable. It is deemed a lifelong disability with no known cure. Though some children with autism could respond well to specialized interventions based on environmental support and adaptation, and make significant improvements, they are believed to remain comparatively weaker in social and communication skills. A wide range of interventions have been developed to tackle autism. These include behavioural methods, education-based approaches, pharmacological interventions to treat anxiety and depression and non-verbal communication systems. In 1991, autism was legally recognized as an eligibility category for special education services in the United States (Ricketts, 2008). This legislation resulted in renewed interest in the condition, and research has peaked in the last decade leading to more detailed surveys and broadening of autism’s scope, characteristics and prevalence. The Causes of Autism The complex nature of autism in itself is an indicator that there could be multiple causes for the condition. Research has identified three broad classes of causes that could result in autism: genetics, biology of the brain and cognitive or psychological factors. “Autism is a behaviourally-defined condition, but is caused by a number of different known and unknown biologically based brain dysfunctions that affect the developing brain’s ability to handle information. Autism is a neurodevelopmental disorder. There is a genetic component in many cases. The different way of processing information, such as perceiving, processing and interpreting information, learning new things and behaving in a well-adapted way, leads to the behavioural deviations that can be observed” (Zander, 2005). The fact that autism affects three times as many males as females along with the findings of studies that have looked at effects of family and twins in autism strongly suggests that autism has a genetic leaning or component (Medical Research Council, 2001). However, neither the mechanism by which genes are implicated in autism nor the process of interaction of genes with the environment of the autistic has been clearly determined leave a wide gap for possible future research to fill. In the area of brain biology there has been evidence that the brains of autistic persons are larger and heavier and there are differences in the cells of some brain regions; that there is reduced activity in areas associated with the processing of social and emotional information, and planning and control of behaviour; and that there are differences to some signalling molecules in the brain such as serotonin (Ricketts, 2008). Yet, all such findings have been rather inconsistent. The cognitive causes of autism are related to the psychological difficulties faced by autistic persons and have been broadly classified into three psychological theories viz. autistic people have difficulty in understanding the mental state of others, they have problems in planning and controlling behaviour, and some autistic individuals can be specially adept at processing fine details because of their special ability and style of processing information in the environment. Inside the Autistic Mind Back to Amanda Baggs. Her YouTube clip attracted worldwide attention not because it was a post from an autistic person but because it told what exactly goes on in the mind of such a person when he or she is manifesting behaviour which is deemed to be odd or abnormal to the rest of the world. Baggs does not speak, instead, she goes through a process of touching and feeling, tasting and smelling her environment to have ‘constant conversation’ with her surroundings (Wolman, 2008). These types of non-verbal stimuli, she asserts, is her ‘native language’, and is as good or as bad as spoken language. Her clip provided an insight into the autistic mind that was not there before. This was precisely made possible by the application of the latest in ICT tools by Amanda herself. In fact, many people at first refused to believe that Amanda could herself put together the clip that she had uploaded. Amanda uses a software application to give voice to the words that she types in. For the clipping, she used a digital camera to record the video and then a video editing software program to put it together meaningfully and subtitle it – functions that would require quite a high level of mental and cognitive capabilities. The popularity of Amanda’s YouTube clip drew a lot of media attention too. However, the purpose of Amanda’s clip was misinterpreted completely. Amanda wanted to project that she was not a captive of her mind as held by common believe, yet all the stories that the media came up with said exactly what Amanda wanted to deny: that she was trapped in her own world. Autistic people have been labelled deficient or diseased only on the basis of three prime indicators of language, social interaction and cultural knowledge. But these are the areas in which autistic persons have been inherently weak in. Yet the Baltimore psychiatrist Leo Kanner who had coined the term autist or autism more than half a century before had also spoken of an array of mental skills or ‘islets of ability’ in autistic persons. But the scientific community engaged in the research of autism never really concentrated on these special areas of ability unless they were of a very extraordinary level. In 1943, Kanner had written in a paper that many of the children that he had examined and were looked upon as feebleminded were in fact all endowed with good cognitive potentialities. Many studies have conclusively proven that persons with autism spectrum disorders demonstrate strengths or special abilities: “a higher prevalence of perfect pitch, enhanced ability with 3-D drawing and pattern recognition, more accurate graphic recall, and various superior memory skills”(Wolman, 2008). It is therefore evident that the autistic brain can excel in certain functions while it can lag behind in others. Is this reason enough to label it deficient, defective or diseased? Speaking comparatively, the whole thing can be turned upside down and viewed from exactly the opposite perspective. If a autistic person excels in a certain mental function, it implies that the cognitive ability of the one who is held to be a normal person is inferior to that of the autistic person in that particular function or aspect. Would then the normal person be termed defective or abnormal by the same standards by which the autistic person was termed diseased? Many would consider the very approach to autism as a disease or defect to be flawed. Most of the research on autism has been so far concentrated on finding a so-called cure for the condition. This approach is known as the disease model, and has been largely responsible for keeping science away from finding out how exactly a autistic brain functions because the focus has always been on curing the autistic brain to function like a normal brain never on the mechanism of the autistic brain itself. The very foundation of this approach has been proven to be weak by the review of 215 articles published in the last 75 years by a professor of psychology Meredyth Goldberg Edelson. Edelson tried to find the basis of establishment of the link between autism and mental retardation in the articles that she had reviewed. “She found that most of the papers (74 percent) lacked their own research data to back up the assumption. Thirty-nine percent of the articles weren’t based on any data, and even the more rigorous studies often used questionable measures of intelligence” (Wolman, 2008). Echolalia and other indicators There are many other characteristics and trends in autism that point towards a brain that is different but not defective. Echolalia, for example is a common characteristic of persons with verbal autism. Echolalia refers to the repetition or echo of verbal utterances made by another person by the autistic person (Heffner, 2000). Up to 75 per cent of people who have autism but can speak, exhibit echolalia (Prizant, 1983). Echolalia can be of two types – immediate echolalia and delayed echolalia. In immediate echolalia, the autistic person repeats what is said almost immediately, while delayed echolalia is defined as “echoing of a phrase after some delay or lapse of time (Simon, 1975). Echolalia has often been seen as one of the most, defining, obvious and irritating trademark of the autistic – a characteristic that differentiates the autistic person from the normal person and makes the autism an abnormal phenomenon. But “Even echolalia is a normal way to learn language. Most children use echolalia to learn language” (Heffner, 2000). All children actually go through two phases of language acquisition – the initial gestalt phase followed by the analytical phase. In the gestalt style the unit of learning is the phrase or the sentence whereas in the analytical phase the unit of learning is the word. Echolalia is a manifestation of the gestalt phase. Children start language acquisition by using the gestalt form but quickly transition to the analytical form. Echolalia peaks at around 30 months in normal children before decreasing and disappearing away (Lovaas, 1981). Even though echolalia was formerly seen as an abnormal behaviour of the autistic, it is now considered a development phase that occurs within a child’s normal cognitive and linguistic process. It is just that the autistic child prefers to hang on to the gestalt phase of language acquisition longer. This may well be intrinsically rewarding to the child as he or she uses echolalia for a wide range of purposes such as turn taking, verbal completion, labelling, providing information, to protest, make requests, etc. (Heffner, 2000). Echolalia can thus be considered not as an abnormal condition but a very natural and normal process in children in echolalia. This is turn exemplifies that the autistic is not abnormal or defective but different from the non autistic. Neuropsychological studies on autism have also found that the behavioural expression of autism show tremendous heterogeneity and the sample populations that different studies on autism consider also differ considerably in their behavioural profile. “Indeed, it would be surprising if one neuropsychological applied to all persons with autism, in view of their widely varying language, cognitive, and social capabilities” (Dawson, 1996). Again, the finding of impairments is dependent on the control group with which the study group is compared and also on the variables on which the groups are matched. The control group could range from the mentally retarded, through the normal to the learning disabled, while the variables could be IQ, language and nonverbal ability. It is therefore very unlikely that the studied would lead to any such consistent findings on the basis of which the autistic could be termed as defective or abnormal when compared to the non autistic population. The sudden rise in the incidences of autism in recent times has been a cause of alarm. However, scientific analyses attribute the phenomenon not to an actual rise in the number of autism cases to “intentionally broadened diagnostic criteria, coupled with deliberately greater public awareness and conscientiously improved case finding” (Gernsbacher, Dawson & Goldsmith, 2005). This goes to prove that what is the condition of Autism is prevalent in a much larger section of the society than was previously estimated or even thought of. Labelling the autistics as defective or abnormal would then amount to identifying a large section of the population as defective or diseased. Autism therefore tends to be a set of ever broadening characteristics that are definitely different from those exhibited by the larger population. This does not in any way certify autism to be a defect or a disease. Conclusion More often than not autistics are labelled as mentally retarded because they cannot express what they know. There could be many reasons behind this tendency to define a set of mental characteristics as faulty or defective. One main reason could be the purpose of research itself. Since funding is likely to be more readily available when the attempt is to find a cure or a solution than to simply identify a difference, researchers could opt the easy way to find the funds for their projects and label autism as a defect or a disease that needed to be cured. Moreover, it has always been a human psychological tendency to treat the different as inferior or bad. This had had been the case with the homosexual population. Homosexuality had at one time been termed a mental illness. Since autistic mental characteristics were different from the larger population, these were termed as abnormal or defective. The coming of the ICT revolution has however changed things radically. ICT applications have enabled the autistics to metaphorically ‘speak their minds’, and in doing so have enabled them to reach across to the other spectrum of the population with the message: We’re here. We’re weird. Get used to it. References -01 1. Wolman, D., 2008, Yeah I’m Autistic. You got a problem with that?, pp. 2 [Online] Available. http://www.wired.com/images/press/pdf/autism.pdf [September 11, 2008] 2. Ricketts, J., 2008, Autism, postnote, Parliamentary Office of Science and Technology, London, UK. 3. Ruble, L., Gallagher, T., 2004, Autism Spectrum Disorders: Primer for Parents and Educators, University of Louisville Health Sciences Centre, National Association of School Psychologists, US. 4. Zander, E., 2004, An introduction to autism translated from Introduktion om autism, Spellerberg, S., 2005, AUTISMFORUM, Handikapp & Habilitering, Box 17519, 118 91 Stockholm 5. Medical Research Council, 2001, Review of Autism Research: Epidemiology and Causes. 6. Heffner, G., J., 2000, Echolalia and Autism, MA Juvedine Centre for Autism Training, GSSH. 7. Prizant, B., 1983, Language acquisition and communicative behavior in autism: Towards an understanding of the “whole” of it, Journal of Speech and Hearing Disorders, pp. 296 – 307. 8. Simon, N., 1975, Echolaliac speech in childhood autism. Archives of General Psychiatry, pp. 1439-1446. 9. Dawson, G., 1996, Brief Report: Neuropsychological of Autism: A Report on the State of the Science. University of Washington, Seattle, Plenum Publishing Corporation. Pp. 179 – 183. 10. Lovaas, O., 1977, The autistic child: Language development through behaviour modification. New York: Irvington Press, 1977. 11. Gernsbacher, M., A., Dawson, M., & Goldsmith, H., H., 2005, Three Reasons not to Believe in an Autism Epidemic. American Psychological Society, pp. 55 – 58. Read More