The Ever-Changing Social Perception of Autism Spectrum Disorders in the United States
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The Ever-Changing Social Perception of Autism Spectrum Disorders in the United States Danielle N. Martin East Carolina University Faculty Mentor: Michael Bassman East Carolina University ABSTRACT This paper aims to examine the comprehensive social perception of autism spectrum disorders (ASDs) within the United States today. In order to study the broad public view of those with ASDs, this study investigates the evolution of the syndrome in both sociological and scientific realms. By drawing on the scientific progression of the syndrome and the mixture of this research with concurrent social issues and media representations, this study infers why such a significant amount of stigmatization has become attached to those with ASDs and how these stigmatizations have varied throughout his- tory. After studying this evolving social perception of ASDs in the United States, the writer details suggestions for the betterment of this awareness, including boosted and specified research efforts, increased collaboration within those experts in autism, and positive visibility of those with ASDs and their families. Overall, the writer suggests that public awareness has increased and thus nega- tive stigmatization has decreased in recent years; however, there remains much to be done to increase general social understanding of ASDs. or repetitive behaviors; however, one im- “Autism is about having a pure heart and being very portant aspect of what makes autism so sensitive… It is about finding a way to survive in complex is the wide variation in expression an overwhelming, confusing world… It is about of the disorder (Lord, 2011). When com- developing differently, in a different pace and with paring individuals with the same autism different leaps.” diagnosis, one will undoubtedly encounter -Trisha Van Berkel many different personalities, strengths and weaknesses. This wide variability between he identification of autism, in both individuals diagnosed with autism, along Tsociological and scientific terms, has with the lack of basic understanding of the experienced a drastic evolution since its general public, accounts for a significant original definition in the early 20th cen- amount of social stigma in our society to- tury. From its original designation by Leo day. Social stigma stemming from this lack Kanner (1943), public understanding of of knowledge has been reported in varying autism spectrum disorders (ASDs) has been degrees since the original formation of the shrouded in mystery and misperception. diagnosis. Studies conducted over the past The basic core features of all ASDs include two centuries have shown perceived nega- problems with basic socialization and com- tive stigma from the view of both the autis- munication, strange intonation and facial tic individual and the family or caretakers expressions, and intense preoccupations 160 Danielle N. Martin behind that individual. Concurrent with aimed to characterize a set of similarly- these studies on perceived stigma have also displayed features observed in a study of been studies on public knowledge, media eleven children. In each of these children, representations and medical classifications. Kanner detected strong cognitive ability In order to understand the evolution of with concurrent severe social interaction autism in both scientific and sociological difficulties, limitations in spontaneity, terms, one must condense this vast amount belated echolalia, hypersensitivity to of knowledge into one general public stimuli, excellent rote memory, and a perception. difficulty processing or adapting to change This body of work will aim to bring to manifesting in an obsession for sameness. light many of the social misconceptions In his later publications, Kanner would tied to ASDs in the United States today, go on to say that he perceived only two in an effort to boost understanding and of these observed features as necessary evaluate the reasons for this stigmatization. and sufficient for the diagnosis of autism: Herein, the reader will find a detailed extreme isolation and obsession on the history of the scientific understanding preservation of sameness. One specifically of ASDs, ending with a description of crucial discovery by Kanner was that of what science now understands autism to the autism spectrum, or the concept that be. Next, the reader will be introduced autism varied significantly between and to current issues in social perception within diagnosed individuals. He noted and the history behind this medical and in his samples that ASDs were manifested social disconnect. Finally, the writer in extremely varying fashions between will conclude with personal suggestions. individuals, with no two individuals expressing identical developmental LITERATURE REVIEW strengths and weaknesses. Kanner also described how autism as a condition Scientific Evolution continued to evolve throughout the lifetime While the syndrome of autism of each individual (Happé, 1995). While was surely existent prior to its official Kanner was the first to describe autism as characterization, it was not until 1912 an independent disorder, it has been found that Swiss psychiatrist Eugen Bleuler first subsequently that his definition was still used the term “autistic” to describe social limited and thus insufficient. withdrawal observed in schizophrenic Following this definition by Kanner adults (Happé, 1995). In the 1912 issue of came a flood of new research on the the American Journal of Insanity, Bleuler autism spectrum. In 1944, only one year falsely described autism as another form after the original definition of the disorder, of schizophrenia; however, his description Hans Asperger published his work on of these individuals did somewhat mirror childhood “autistic psychopathy”; however, modern descriptions of individuals with this work would not become well known an ASD (Syriopoulou-Deli, 2010). It was until its translation into English in 1997 not until a 1943 edition of the journal (Syriopoulou-Deli, 2010). In a fashion The Nervous Child that child psychologist similar to Kanner, Asperger described Leo Kanner presented his complete severe social withdrawal, obsession with definition of autism as a unique disorder routine or sameness, and individualized under his label of “early infantile autism.” interests which often became additional Kanner’s 1943 paper, entitled “Autistic obsessions. In comparison to the previous Disturbances of Affective Contact”, subjects studied by Kanner, however, these 161 Explorations | Social Sciences new participants expressed significantly genetic, neurological or environmental better socialization and communication basis of autism was seen after this post- skills. Asperger’s Syndrome—as the term Bettelheim shift in the late 20th century; was defined by Lorna Wing in 1981— however, the uncertainty surrounding this could then be employed to describe those biological basis caused a definite split in who existed on the high-performing end of the scientific community of the time. The the spectrum, and whose difficulties were influential study by Folstein and Rutter, less severe than those with the straight published in 1977, first introduced autism diagnosis of autism (Happé, 1995). Since as a specifically genetically-based disorder. its introduction, guidelines concerning an Following studies by Rutter and Schopler, Asperger’s diagnosis have been constantly published in 1986, looked further into the challenged, with correct categorization frequency of the fragile X syndrome in as the main point of consternation autistic individuals, which is an abnormality (Syriopoulou-Deli, 2010). With this in the X chromosome that largely affects further categorization of individuals, males. In 1987, Karandanos examined understanding of autism was made both the idea that autism and mental deficiency more complete and more complex. were not synonymous, and are caused It was in later papers of 1956 and 1967 by different neuropathological issues. that prominent educator and psychiatrist Discerning this biological basis, however, Bruno Bettelheim, in an attempt to explain has always been difficult, as ASDs vary so away the confusion enshrouding ASDs, significantly between individuals. Darby introduced his “refrigerator mother” (1976) and Williams (1980) addressed the theory. This theory, which was discredited issue of secondary complications and were following later scientific study, hypothesized unable to provide a sufficient biological that autism in children was developed as explanation (Syriopoulou-Deli, 2010). a response to a dangerous and unloving While the search for a biological basis of environment created specifically by the ASDs has continued on to the present, child’s mother. He described these children research findings are both convoluted and as “solipsistic as infants in their contact insufficient. with reality,” and in his view this condition While the search for a sufficient biological was solely a psychological issue that could explanation has yet to come to fruition, this be reversed with intense therapy for both multitude of studies has led to a better- mother and child. This hypothesis was accepted and more complete definition officially discredited after the medical field of ASDs. Increased understanding has as a whole shifted from pure psychological encouraged a transition from perceiving review to more biologically-based those with autism as mentally ill or psychological studies of autism; however, dangerous to viewing them as special-needs following this shift, society