Situating Our Perspective in the Field of Autism Research
Autism is commonly defined today as a complex developmental disorder affecting the brain’s normal development of social and communication skills and typified by restricted and repetitive patterns of behavior (APA, 2013). Autism is considered to be a pervasive disorder, in which symptoms first appear in early infancy, lasting throughout an individual’s lifetime, with poor prognosis in terms of remission (Myers & Johnson, 2007). In its most severe forms, autism may cause an extreme withdrawal from the external world, entailing little or no social interaction as well as persistent repetition of non-adaptive routines and behaviors. In its milder forms, autistic individuals can lead relatively normal lives, primarily struggling with the development of their communication skills as well as having difficulties integrating into society.
Autism was initially designated as a distinct psychological syndrome in the mid-twentieth century by two contemporary psychiatrists: Leo Kanner and Hans Asperger. Until that time, autism was considered to be a unique form of psychosis called “childhood psychosis” due to its early onset of symptoms (Potter, 1933; Kanner, 1971). It was Kanner’s seminal paper, “Autistic Disturbances of Affective Contact” (Kanner, 1943), that, for the first time, extracted autism from the domain of psychosis and designated it as a distinct syndrome.1 In this paper, Kanner developed an initiatory account of the singularity of autistic symptomatology. Among the many defining characteristics deduced from the behavior of his autistic patients, Kanner accounted for: late acquisition of linguistic skills; mechanical use of language (mainly focused on the use of nouns and personal pronouns); parrot-like repetition of sounds and words (“delayed echolalia”); general ignorance of the presence of other people; treatment of people like objects; adverse reaction to loud noises and moving objects; poorly coordinated gait; as well as lack of spontaneity and fussiness about food. These unique autistic traits were designated by Kanner under two original meta-psychological categories: “sameness” and “aloneness.” Under the first, Kanner designated all those autistic traits having to do with the persistent desire for the maintenance of a static world in which change is not tolerated (Kanner, 1943, p. 245; 1951, p. 106). Under the second, Kanner designated all those characteristics having to do with difficulties in communication and the general disinterest in forming relationships with other people (Kanner, 1943, p. 242). The categories of sameness and aloneness articulated by Kanner can still be found today in a revised or altered manner in some diagnostic manuals.
The most contemporary manual cataloguing the different characteristics meriting a psychiatric diagnosis of autism is the fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5). The DSM-5 offers a standardized method for the diagnosis of autism, distributing autistic individuals on a spectrum of “functionality” according to which autism has been re-defined under the scope of the “autism spectrum disorder” (ASD).2 In the DSM-5, autistic symptoms are divided into two major groups. The first major group includes persistent deficits in social interaction and social communication. Under social interaction deficits the DSM-5 notes: abnormal social approach; difficulties in conversation; reduced sharing of interests, emotions or affects; and a failure to initiate or respond to social interactions. These result in deficits in the development, maintenance, and understanding of relationships at all ages. Under social communication deficits the DSM-5 notes: deficits in verbal and nonverbal communication; abnormalities in eye contact and body language; as well as a difficulty in understanding communicative gestures and facial expressions. The second major group includes repetitive patterns of behavior manifesting as: repetitive motor movements; use of objects or speech (echolalia); inflexibility and adherence to routines or ritualized patterns of verbal or nonverbal behavior; highly restricted and fixated interests; and hyper- or hypo-activity in response to sensory input. According to the DSM-5, the severity of autism is determined by the accumulation of specific symptoms provided in these two major groups. The more symptoms an individual exhibits and the more acute the symptoms are in their behavioral manifestation, the more severe a diagnosis of autism will be, varying on a spectrum between “high-functioning” and the more severe “low-functioning” autism (APA, 2013). Accordingly, we see that the DSM-5 conditions the diagnosis of an individual on the autism spectrum on the quantitative accumulation of autistic behavioral traits.
Regardless of the exact diagnostic framework used to identify autistic symptoms, the prevalence of individuals diagnosed today as being somewhere on the autism spectrum is drastically rising (Blaxill, 2004). The current prevalence of children diagnosed as autistic is estimated to be approximately 1% (Elsabbagh et al., 2012) but has also been reported to be as high as 2.5% (Kim et al. 2011; Xu, Strathearn, Liu, & Bao, 2018). The rising prevalence in cases of autism has made it a popular object of scientific research. Accordingly, while previously the investigation of autism took place solely in the psychologist’s or psychoanalyst’s clinic, today it can be observed that scientists from a multitude of fields attempt to clarify the underlying causes of autism—explaining its symptomatology using different tools that designate it in behavioral, cognitive, physiological, biological, and genetic terms.
One of the major epistemological presuppositions underlying scientific research is that while scientific knowledge is dynamic and changing, the objects of science are knowledge-independent entities in the world. Correspondingly, the majority of scientific studies on the subject of autism are rooted in this “realist” approach, addressing autism as a knowledge-independent phenomenon that has been affecting humans even before its discovery and contemporary categorization. Scientists ask: what kind of thing is autism? Is it a psychological, physiological, or genetic condition? Scientists also ask what makes autism a singular instance of each of these categories? Which behaviors and conditions distinguish it? They execute meticulously constructed empirical studies in order to clarify these questions and to explain what the essence of autism is (Cushing, 2012, p. 24).
Nevertheless, in spite of the growing amount of publications concerning the subject of autism, the scientific community of the twenty-first century still does not have a clear conception of the essence of autism (pp. 38–39). While the ever-changing behavioral categorization of autism can be found in the DSM-3–5, the multiple attempts to locate its underlying cause in this way have been unsatisfactory up to this day (Grandin, 2006, pp. 35–36; Wing, Gould, & Gillberg, 2011). Various other cognitive theories concerning autism fail to explain the abundance of behavioral conditions presented in different cases (Rajendran & Mitchell, 2007), while other meta-psychological theories are unsuccessful in defining an essential positive category designating autism (Barnbaum, 2008). Biological research suggests results that are either related specifically to a small subset of symptoms or not distinctive to autism alone (Šestan, 2012). Finally, genetic-based research might explain the prevalence of autism in familial groups (Sandin et al., 2014) but has not yet been able to differentiate and pinpoint a specific genetic cause that explains the variance in symptoms and behavior (Cushing, 2012, p. 38; Maleval, 2012, p. 27). When taking this into consideration—as well as the rising prevalence of individuals diagnosed as autistic and the profound impact it has on them and their families—it can be understood why the investigation of autism is still relevant and important for researchers from a multitude of fields and practices.
However, while the work achieved by the scientific community on the subject of autism is vast and crucially important, there remains an acute disparity between, on the one hand, the theoretical and practical frameworks developed in these fields and, on the other hand, the subjective testimonies of “high-functioning” autistic individuals presented in books and popular media. This disparity is not rooted in the use of different terminologies but rather is a manifestation of a qualitative difference between these two descriptive paradigms. While scientists designate autism as a mental or physical disorder to be objectively studied—and as a result to be contained—many autistic individuals attribute autism to their sense of selfhood, defining it as a unique mode of openness to the world that is an immanent aspect of their subjectivity. They describe autism as a mode of being, fundamentally...