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Home , Autism, Autism (journal), Lorna Wing

The Ever-Changing Social Perception of 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 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 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 , 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 ; however, his description 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 similar to Kanner, Asperger described 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 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 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 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, , 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 as a whole has individuals. It is now generally understood continued to struggle with the concept in the scientific community that autism of autism as a purely medical condition is not a medical issue that may be cured; (Syriopoulou-Deli, 2010). Bettelheim’s rather, it is a disorder marked by display original studies introduced a great deal of certain social characteristics. The of misunderstanding into the public eye, establishment of this strong research base as well as confusion about the causes and has also helped to create a set of criteria foundations of autism. for the diagnosis of autism. Through A significant increase in biologically- statistical-epidemiological research, based studies attempting to find the Lorna Wing and Judith Gould (1979,

162 Danielle N. Martin

1996) defined the basis of autism as “an increased understanding of what autism obvious divergence from the expected is and is not, have allowed for significant socially correct behavior, independent of recent progress in the autistic community; their mental and cognitive status.” In an however, stigma toward these individuals in evolution from Kanner’s earlier statements, the United States has far from disappeared Wing and Gould also introduced the idea (Bogdashina, 2006). of an “autistic continuum” that remains the accepted theory (Syriopoulou-Deli, Social Evolution 2010). These ideas remain the basis for The steady scientific evolution of ASDs autism identification and diagnosis. has been paralleled with a simultaneous Through this body of study, the current evolution in social perception and criteria for the evaluation and diagnosis stigmatization. Stigmatized persons, as of autism have been detailed. Generally defined in 2009 by Oren Shtayermman, known as Wing’s triad of impairments, are those “who possess a quality that others three fundamental impairments exist perceive as negative, unfavorable, or in at different stages of development that some way unacceptable.” Stigmatization are necessary and sufficient for an ASD of those with developmental diagnosis. These three impairments lie in has always been common, as it is human the areas of social interaction, imagination nature to judge those who are noticeably and communication. It is extremely different, with severity of this judgment common for individuals to display some sort and stigmatization typically increasing with of repetitive behavior pattern in addition severity of the condition (Shtayermman, to these three impairments; however, this 2009). Since the original definition of behavior is not necessary in order to classify ASDs, those on the spectrum and their an individual as autistic. It is now widely families have been have been challenged by understood that each individual is affected stereotypes. The numerous reasons for this differently by autism; some may experience associated stigma include the individualized learning disabilities, while approximately nature of the syndrome, the associated 10% develop savant skills in specific areas. different speech and actions, and the lack Other secondary characteristics include of understanding in its physical basis. language difficulties, issues with motor This stigmatization is made worse due to skills, abnormal physical development the inability of many autistic individuals or function, inappropriate emotional to express their thoughts or emotions to reactions, and hypersensitivity to sensory . stimuli. It is also common for autism to A dramatic evolution in social perception co-occur with a variety of other disorders may be seen while studying the history of including , attention deficit disorder autism study in the United States; however, and (Bogdashina, 2006). there exists a common thread of social At this time, there are two internationally- challenges that have been reported by employed and standardized diagnostic autistic individuals of all ages at all points tools: the World Health Organization’s in history. The most prominent of these International Classification of , common experiences is arguably the 10th edition (ICD-10) and the American recognized extreme feelings of isolation Psychiatric Association’s Diagnostic and extending from childhood to adulthood, Statistical Manual of Mental Disorders, with many individuals reporting increased 5th edition (DSM-V). These standardized feelings of isolation as they grew older due diagnostic tools, in conjunction with an to increased self-awareness and installment

163 Explorations | Social Sciences of stigma in the minds of peers. The communication, as autistic individuals reactions to these feelings of isolation often either lack the understanding of understandably vary widely between how to initiate conversation or the self- individuals, with some attempting to accept confidence to approach a communicative these feelings of loneliness and others situation. Continuing communication attempting to improve relationships with after initiation is similarly difficult, as their peers. Again, it may be seen that the participating in unstructured dialogue amount of improvement on these existing and understanding the implicit meanings relationships will vary significantly from behind verbal messages can be extremely case to case, depending on a wide range of confusing. In addition to the basic lack of factors such as environment, intensity of understanding, communicating is made impairment, and personality of the autistic more difficult when one includes the individual (Müller, Schuler, & Yates, more subtle behaviors that are involved 2008). These feelings of isolation are also in communication as well. These subtle intrinsically connected to the amount of behaviors include facial expressions, stigmatization that an autistic individual hand , and tone of voice (Müller, receives from those in the surrounding Schuler, & Yates, 2008). All of these factors environment. Studies have shown that together create an outline for conversation sense of stigmatization felt by those with an that is infinitely more complicated than it ASD is directly linked to their self-esteem, may seem to a individual. as those who perceive a greater amount These feelings of isolation, intensified of stigmatization have lower self-esteem by the described communication barriers, (Shtayermman, 2009). One suggestion for create an understandable longing for this relationship was presented by Martz intimacy in many autistic individuals; in 2004, who hypothesized that those with however, this intimacy is again difficult to developmental disabilities such as an ASD build and maintain. While it is often the may internalize outside stigmas placed wish of an autistic individual to become upon them by peers (Shtayermman, 2009). more emotionally and physically connected Combating these feelings of isolation and with another person, the basic limits of stigmatization is an extremely difficult his/her own tolerance for emotional challenge for many on the spectrum, as probing and physical touch become a they are also faced with a multitude of fundamental problem. Then, it may be additional impairments which act as an understood that it becomes important to unlimited source of personal challenges. develop relationships that are fulfilling yet Subsets of autistic individuals have still leave a significant amount of personal reported additional personal challenges space—both physically and emotionally including, but not limited to: difficulty (Müller, Schuler, & Yates, 2008). Through initiating and maintaining communication, these results by autistic individuals, a sense issues building relationships, and of severe loneliness and struggle may be combating the preconceived notions felt, because of this difficulty in emotional of peers. Communication is, on a very connection. basic level, an aspect of daily life that The intensity of these social challenges, many neurotypical individuals take for both individually and holistically, is granted; however, it is a point of constant determined in a large part by the consternation for those with an ASD. environment and individuals that an autistic Difficulty initiating conversation is often individual encounters on a daily basis. In reported as the most difficult aspect of considering what creates this complete and

164 Danielle N. Martin immersive social environment, one must psychological rather than physical realm, it consider the understanding of ASDs that can be understood that Bruno Bettelheim permeates throughout that environment was the first individual to propose a and the preconceived notions or possible basis for the syndrome. Bettelheim stigmatizations that combat comprehension introduced the psychogenic myth, which of new education or research. All of these suggested that the “refrigerator mother” factors together create a social perception was the cause of autism. His refrigerator of autism that is undeniably community- mother theory suggested that autism in based yet varies widely between individuals. children was simply a maladaptive response In order to understand the current social to a hostile and unloving environment perception of ASDs in the United States as created by the child’s parents, with more a whole, one must first examine the history emphasis placed on the parenting styles and evolution of autism-based stigma. of the mother. In Bettelheim’s view, the The association of negative stigmatization mother was herself in need of severe with ASDs began with Eugene Bleuler’s psychological treatment, and in many cases use of the word “autistic” to describe social the child was removed from the mother’s withdrawal in schizophrenic patients. This care. While this theory has since been original terminology assigned a decidedly discredited, the ideals associated with the negative connotation to the word. Re- psychogenic myth remain a challenge to use of the term by Kanner and Asperger the families of autistic individuals today. In roughly thirty years later to describe a addition, it may be seen in parts of Europe completely new syndrome encouraged that this belief holds precedence over more this negative connotation to transfer more recent scientific advances (Happé, 1995). It generally to all of those individuals with may be initially difficult to understand how an ASD. Introducing this new syndrome this suggestion could be so widely accepted as almost an outcropping of schizophrenia, in the scientific and public realms; however, a disorder that is so negatively perceived when one considers the social challenges of in the public eye, set those with autism the time, it is much more easily understood. at an immediate social disadvantage. A At this point in history, the United States large dose of public intrigue was added was in an extreme transition point following with the subsequent confusion concerning World War II. During this time, women in nearly every aspect of ASDs. Together, some regions were integrated into the work these two factors have provided a basis for force for the first time in United States public confusion and creation of an overall history, and this shift was cause for strong negative social perception of autism. opposition by more conservative individuals Following the original classification of (Syriopoulou-Deli, 2010). This opposition autism as an individual disorder by Kanner made acceptance of the refrigerator mother in his landmark paper of 1943, a wide theory more understandable. Here, one range of theories concerning the basis of may witness the first example of how broad autism were expressed. Initial research social perception of autism in the United was based in the field of , and States was undeniably influenced by the focused specifically on identifying the basic environment of the time. cause of the syndrome in order to isolate In following years, a shift from means of prevention, early identification, Bettelheim’s refrigerator mother theory and continuing treatment (Syriopoulou- was seen along with a simultaneous shift in Deli, 2010). As the condition was the scientific realm as a whole. During this initially considered to be founded in the time, the study of autism progressed from

165 Explorations | Social Sciences a hypothetically psychologically-based sense, the autistic individual is often syndrome to one with a both biological represented as being somehow “less than and environmental basis. Since the mid- whole” with a fragmented twentieth century, a significant increase and personality. On a more obtuse level, in these biologically-based studies has autism is represented as something that will been observed; however, doubts remained fragment a family and even the surrounding that autism could be considered solely community. More recent studies on autistic biologically-based. The search for a families have reinforced these ideas, as they biological basis has become seemingly have shown high divorce rates and familial more convoluted over time and remains in families with one or more autistic to be elucidated. Simply identifying the child. Fragmentation themes originated condition was difficult in itself, as there during the time of Bettelheim and the are significant variations between the type psychogenic myth, when those experts on and intensity of impairments in autistic autism believed that autistic people were individuals (Syriopoulou-Deli, 2010). This somehow broken or fragmented due to continuing amount of doubt, paired with their condition (Sarrett, 2011). The theme the inability of the scientific community to of imprisonment of the autistic individual define a biological basis for the condition, has also been commonly presented to the has fueled a significant amount of media public. In this view, it is generally believed attention and public bewilderment. that a normal, neurotypical person is Media portrayal of ASDs is an extremely somehow trapped in an autistic shell of important facet to consider when attempting a body. Many of these depictions instill to define public perception of those in viewers an urgent need to assist with with autism. The original media tropes releasing the individual from the confines created during the time of Bettelheim’s of autism. This idea is intensified by an dominance have persisted despite the additional commonly-seen media trope increase in overall understanding. This of utter unawareness of self and others shift is due to the persistent flux of in the autistic person (Sarrett, 2011). media attention that is largely created by Most recently, the media emphasis has people who are themselves neurotypical. been placed on the rise in rates of autism According to the 2011 study by Sarrett, diagnoses and the idea of a possible media attention throughout the years has autism “epidemic”. Again, it may be seen consistently focused on the fragmentation that the media attempts to highlight the and imprisonment of autistic individuals, most publicly enticing details or concepts specifically autistic children. These themes behind ASDs (Sarrett, 2011). With this have worked to introduce an additional relatively prominent idea of an autism level of mystery into the public eye, along epidemic paired with a lack of education with a sense of sadness for the fragmented concerning the syndrome throughout human being. Undoubtedly, this media the general public, it is understandable attention both creates new stereotypes and that the negative connotations and social reinforces existing ones in the realm of the stigmatizations associated with autism general public. Thus, the media impacts persist in today’s society. how the public interacts with those who Discussion are diagnosed with a such as After understanding the history behind an ASD. The theme of fragmentation is the scientific and social evolution of autism apparent within media representations on as an independent syndrome, one begins a variety of levels. In the most apparent to see that there may be ways to foster a

166 Danielle N. Martin more tolerant and open understanding have worked to increase awareness for of those with autism in the United States many years; however, the knowledge-base today. A first step would include successful on ASDs in health care providers remains management of the syndrome. In order very low (Quirantes, 2009). While it is to ensure the successful treatment of an important for these health care providers ASD, and to provide the best quality of to continue education on the general life possible, a collaborative effort between premises of autism, the application of this all components of the health care team is knowledge is arguably more important; essential. This collaborative effort should therefore, it may also be concluded that include clinicians, teachers, school workers, methods of and treating autism agents from outside support groups or should be improved as well. According to foundations, the family, and the autistic the American Academy of , it is individuals themselves (Quirantes, 2009). important that children are screened for It is only through a strong and dynamic autism frequently and at a young age, so that support system such as this that an autistic children may begin to receive intervention individual may truly strive in today’s world. services ideally before the age of 3 (Warren This open support and communication et al., 2011). In order to promote this between all members also fosters a caring early childhood screening, the American sentiment that promotes patience and Academy of Pediatrics developed several adaptability in the team members. A new strategies for the identification of willingness to adapt to the needs of each autistic children by pediatricians (Johnson individual autistic child or adult is essential & Myers, 2007). Within these strategies, it for those who wish to work with them, as was suggested that once a child had been the needs and personality of each autistic identified as at-risk for developing an ASD, individual vary so significantly. a formal screening tool such as CHAT As research continues to move forward, (Checklist for Autism in ), ITC it is equally important that a collaborative (Infant- Checklist) or M-CHAT relationship is fostered between clinicians (Modified Checklist for Autism in Toddlers) and researchers. Improvements must be should be employed. Without formal made in each of these individual fields screening tools such as these, physicians are if significant future advances are to forced to rely solely on clinical impressions be made. Within the field of scientific and have a much higher chance of research, specifically epidemiological misdiagnosis; however, it remains that only studies, researchers should be pushed to approximately 8% of pediatricians screen identify social biases that could impact for ASDs on a regular basis (Quirantes, the population study samples, and to 2009). Another significant challenge for question how many children remain health care providers is diagnosing ASDs undiagnosed within each community. in children from ethnic minority groups, Researchers should also aim to study the specifically those whose primary language syndrome across a range of communities is different from that of the physician. and cultures, as comparative social bias This difficulty is reflected in the current and diagnoses range significantly (Lord, under-representation of minorities in 2011). On a clinical level, education mental health facilities and other support levels must be boosted in all health care organizations. These low diagnostic rates providers concerning mental disabilities in minorities are possibly due to actual such as ASDs. Large organizations such lower rates of ASDs; however, studies have as and the Autism Society shown that this discrepancy is more likely

167 Explorations | Social Sciences due to the failure of physicians to generate out to the public. The importance of a correct diagnosis. Forming an adequate this increase in autistic voices cannot be clinical judgment on children from many stressed enough, as they are truly the key ethnic minorities may prove difficult to to understanding the needs and emotions many physicians, due to discrepancies in associated with ASDs. These public familial background or socio-economic statements given by autistic individuals status. Due to this mutual lack of and their families work to counteract the understanding and communication, it has current stigmatization and negative social been seen that physicians are less likely to perception that are so prominent in the screen for ASDs in children from certain United States today (Müller, Schuler, & minority groups (Begeer et al., 2009). Yates, 2008). Open narratives of life with By increasing the rates of appropriate autism are often particularly informative diagnosis through adequate usage of and communicative, as they present a diagnostic tools, quality of care for autistic comprehensive new perspective and individuals may be significantly increased challenge the reader to forgo pervious and more accurate rates of autism within assumptions created by misunderstanding communities determined (Quirantes, or media representations. This open 2009). In this consideration, health care communication stream flowing from providers must take on the role of both many autistic individuals continues to be advocate and support system. challenged by the silence of those that While the importance of increased cannot or will not communicate, as this communication, more comprehensive inconsistency brings questions about the research aims, and improved physician generalizability of these autistic narratives; care should not be undersold, many however, these new publications have consider the evolution of better social driven the media to portray ASDs in a perception for autistic individuals the most different light, as it presents a new face of important future progression. The social autism to the general public (Sarrett, 2011). image of autism has improved dramatically From the aforementioned statements, it since the creation of groups such as the US may be suggested that an even further Autism and Asperger Association, National increase in autistic accounts is critical Autism Association, Autism Society, for the continued improvement of social and Autism Speaks. These groups have perception of autism in the United States. worked to support ongoing scientific and sociological research, provide resources CONCLUSIONS for health care providers and caregivers, and strive for an increase in overall quality After considering the body of work that of life for autistic individuals. Support displays a history of misrepresentation services such as these have also played an and confusion regarding autism, one may important role in educating the general easily understand the reasons behind the public on the intricacies of autism, and negative social perception which enshrouds therefore in improving the general image the syndrome today; however, movement of autism in the eye of society. Even more toward a more positive view is both importantly, these groups have provided tangible and promising. After decades a safe outlet for the mixing of autistic of confusion concerning the origin of individuals and their caregivers, which ASDs—be it biological, psychological or has prompted a significant increase in the environmental—the American public has numbers of autistic individuals speaking been concurrently intrigued and baffled

168 Danielle N. Martin by the condition; however, recent scientific of autism has improved significantly since breakthroughs paired with an increase in Kanner’s 1943 description and Bettelheim’s autistic voices has worked to combat this following theories. This research suggests bafflement. While a significant amount of that this boost in understanding and social public relations work remains to be done, awareness should continue to improve with and many improvements are needed in all greater public understanding of ASDs aspect of autistic care and treatment, it and continuing research to elucidate the may be suggested that the social perception foundations of the disorder.

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