Autistic Intelligence

Interaction, Individuality, and the Challenges of Diagnosis

Douglas W. Maynard, Jason Turowetz

• Publisher: University of Chicago Press
• Year: 2022
• ISBN:
  9780226815992
• Topic: Ciencias sociales
• Subtopic: Sociología

An examination of diagnostic proces s es that questions how we can better understand autism as a category and the unique forms of intelligence it glosses. As autism has grown in prevalence, so too have our attempts to make sense of it. From placing unfounded blame on vaccines to seeking a genetic cause, Americans have struggled to understand what autism is and where it comes from. Amidst these efforts, however, a key aspect of autism has been largely overlooked: the diagnostic process itself. That process is the central focus of Autistic Intelligence. The authors ask us to question the norms by which we measure autistic behavior, to probe how that behavior can be considered sensible rather than disordered, and to explore how we can better appreciate the individuality of those who receive the diagnosis.Drawing on hundreds of hours of video recordings and ethnographic observations at a clinic where professionals evaluated children for autism, the authors' analysis of interactions among clinicians, parents, and children demystifies the categories, tools, and practices involved in the diagnostic process. Autistic Intelligence shows that autism is not a stable category; it is the outcome of complex interactional processes involving professionals, children, families, and facets of the social and clinical environments they inhabit. The authors suggest that diagnosis, in addition to carefully classifying children, also can highlight or include unique and particular contributions those with autism potentially can make to the world around us.

1

Common Sense and the Interaction Order of the Clinic

This is a book about autism spectrum disorder (ASD). More specifically, it is a book about the interactions in clinics where children go to be evaluated for a possible autism diagnosis. The clinic is the site where a history of odd or troublesome behavior may be assigned a name, one that will follow the bearer through the school system, through the offices of therapists and physicians, through friendships and relationships, and sometimes into the courtroom and welfare system. Yet for all its importance, and despite the dramatically rising prevalence of autism diagnoses around the world, there has been little research about the clinic and its human operations per se—how testing gets done and how diagnosis is actually accomplished on the ground, by actual participants dealing with one another in real time. Our research has involved spending time with clinicians, children, and families in the clinic, observing how children are evaluated for autism and how clinicians decide whether or not to give a life-changing label to what, up to that point, had been an amorphous cluster of missed milestones, behavioral problems, and seemingly inexplicable or even mysterious conduct.

Though our focus on interaction and the phenomenon of commonsense knowledge is quite specific, we expect that our audiences will be diverse. Sociologists with an interest in medicine and diagnosis; scholars of science, technology, and disability; linguists and psycholinguists; and anthropologists may all find something of interest in this book’s pages. Not least, we hope that people with autism and their families will find parts of the text that resonate with them. In particular, we describe how autism as a form of sensemaking has its own logic, coherence, and intelligibility. Understanding this will not only enhance appreciation for the many strengths children on the autism spectrum exhibit but also prompt further examination—and perhaps expansion—of common sense itself.

Finally, clinicians and mental health practitioners may find something of value in the book. Although it is primarily a work of academic sociology rather than a set of practical suggestions for reforming diagnosis or improving the lives of those on the spectrum, we attempt to identify crucial but tacit features of interaction that end up mattering for the outcomes of autism cases. Whether an understanding of these features can enhance diagnosis is not for us to decide, although we offer suggestions along those lines. At the same time, we attempt to convey something of the very real demands that clinicians face as they go about the work of understanding children and helping families, educators, and others handle the challenges that bring children to the clinic in the first place.

The Search for Answers

When Dan Chapman1 was nine years old, he was arrested at school. Though it was not the first time the school had called the police on Dan, the incident nonetheless stood out from the others, as it ended with five officers pinning him to the ground, handcuffing him, and tying his feet together. This was the last straw for Dan’s parents, who for some time had been unhappy with the school’s punitive responses to their son’s behavior and administrators’ refusal to listen to advice about how to deescalate tense situations before they became explosive. The Chapman family had recently moved their son to a new school, where he was doing better overall. Still, he had already been suspended several times and was only attending classes on a half-day schedule.

Dan’s family was seeking answers, searching for a diagnosis that would explain their son’s behavior and help him access the support services he so desperately needed. This search brought them to Central Developmental Disabilities Clinic (CDDC),2 the site where we conducted field research for four years. In some ways, Dan stood out from other children we observed. For example, while meltdowns and tantrums were commonplace, these children rarely if ever became violent, much less had encounters with police. Nonetheless, all the children, including Dan, engaged in disruptive behavior that seemed to defy common sense; all had problems that could not be settled or explained by laypeople alone, leading their families to seek out the advice of professionals. In these respects, their journeys to and experiences at the clinic share important similarities.

These similarities constitute our focus in this book, which examines the trajectory that culminates in an autism diagnosis for Dan and children like him. More precisely, within that trajectory, we focus on the methods clinicians use to decide whether to give the diagnosis. Unpacking that trajectory allows us, as sociologists, to deal with a host of issues that the now vast literature on autism has not fully explored. For any child, what does an experience at the clinic entail? Mostly, of course, it means being subjected to a variety of assessments: medical, cognitive, speech and language, behavioral, and so forth. But how do clinicians from various disciplines conduct these assessments? How do they generate and use the results to determine—fatefully—whether a child does or does not qualify for the autism diagnosis? And how do children and families respond to that decision?

Such questions signify that, although we know a good deal about what happens after a child is diagnosed with autism, the diagnostic process itself remains something of a black box. Our aim in this study is to open that box and inspect its workings. Doing so will establish a basis for addressing a broader set of questions that get at the heart of current discussions about autism: When all is said and done, what is autism? Is it “real”? And if so, to what degree are its roots to be found in biology (genetics and genomics) and neurology (structures of cognition)? Can we even say whether autism is intrinsic to someone like Dan as an individual? To what degree are the social environments—family, school, clinical, and other institutions—in which Dan (or any other child with autism) exists implicated in autistic behavior? What are the social dynamics within the professional decision-making context where the diagnostic decision is made and then conveyed? What analytic tools do we have to address these matters, and how do we use them? Finally, given the documented high prevalence of autism, what can be done to ameliorate the challenges it presents for diagnosed children and their social environments?

This chapter begins to answer such questions by following Dan’s path to and experience in the clinic. As we do this, we explain our sociological understanding of autism in terms of conduct that violates or disrupts common sense—the tacit assumptions by which we continually measure social competence in the everyday world. We suggest that, in challenging commonsense assumptions, autistic behavior can make those assumptions strange, bringing to the surface deep sensemaking practices that are invisible when interactions go smoothly. Drawing on an example from Prizant (2015:114), when a teacher asks a question of her class, then must instruct an autistic student that he should not just blurt out an answer but should raise his hand so that she can call on him, and then must further explain that she cannot call on him every time because she sometimes needs to let another student talk, she in effect exposes the taken-for-granted rules of the classroom, articulating them in ways that are usually unnecessary.

Common sense is the pervasive but largely invisible foundation for everyday thought and action, although participants must demonstrate their commitment to its assumptions whenever they sanction others for violating them or defend an action of their own. Even so, common sense is far from static. As we explain below, commonsense actors are capable of widening their repertoires of understanding to accommodate a child’s seeming strangeness. This involves grasping the logic behind otherwise odd or challenging behavior and incorporating that logic into one’s repertoire of ordinary comportment—as when another teacher (Prizant 2015:143), aware that an autistic student frequently visits the zoo and talks to the animals, makes approving animal sounds (meowing like a cat) whenever the student goes beyond their rigid habit of drawing cartoon characters to engage in other forms of drawing. In other words, rather than judging the child as incompetent for failing to properly participate in the neurotypical world, a teacher may make the strange familiar (Grinker 2007) by entering the child’s world, becoming competent in their methods of sensemaking, and using those methods to create an intersubjective space where child and adult can make sense together.

The themes of common sense and possibilities for its expansion are explored throughout the book in the context of evaluating and diagnosing autism, both being core activities in what we call the interaction order of the clinic. In this chapter, we explain what we mean by the concept of an interaction order and how it structures the experiences children like Dan have in the clinic. We then describe our data and data collection and set the stage for subsequent chapters, all of which stress the centrality of social interaction for understanding autism and the diagnostic process. Finally, we conclude with a brief summary of each of the book’s chapters. Overall, we suggest that taking an interactional approach to evaluation and diagnosis creates possibilities for enhancing appreciation of autistic children’s competence and intelligence—rather than their deficits and challenges—in both the clinic and the broader society.

Arriving at a Diagnostic Clinic for Autism

Dan Chapman was first seen at a county mental health center when he was five. At that time, he was diagnosed with a “disruptive behavior disorder” and other conditions. The problems continued, and by the time he was nine and in the third grade, Dan had been suspended from school sixteen times in a single semester. According to Dan’s mother, the incidents that led to his suspensions escalated after the principal “got in Dan’s face” and demanded that he leave the premises. School personnel frequently called for police intervention, which led to incidents like the one that resulted in his arrest. According to his medical records, during that incident Dan had “pulled two fire alarms, threatened someone with a 2 by 4 [piece of lumber], and flipped over a table. There was police involvement.” The report immediately continues: “It is noted that the precipitating factor that was identified in this recent incident was a change in schedule.” Events like this seemed to happen without warning, frequently leaving bystanders upset, confused, and at a loss for explanations.

We first met Dan in the winter of 2014. A stocky boy with dark hair and eyebrows, he was one of forty-nine children we followed over four years of fieldwork at CDDC, a large diagnostic center in a medium-sized US city.3 Dan had been referred to the clinic by his pediatrician, who recommended an assessment for “cognitive disability as a possible factor for behavioral outbursts.” By that time, Dan had already seen numerous mental health professionals who, per his medical record, commented on his poor social skills. Dan was prescribed various courses of treatment: most recently, psychiatrists at the county mental health center had put him on a combination of the powerful antipsychotic drug Seroquel and the mood stabilizer lithium, medications whose side effects are known to include slurred speech, sluggishness, and weight gain.

These disparate labels and interventions attest to how challenging it can be for professionals to explain the troubles experienced by children such as Dan. By the time they are evaluated at a clinic like CDDC, children often have had contact with a variety of institutions and agents, including teachers, therapists, physicians, and sometimes, as in Dan’s case, the police. To adapt Goffman’s (1959a) study of mental hospitalization, these experiences can be considered aspects of the children’s preclinical, incipient career as a person with autism. As used by sociologists, the term career describes a common sequence of stages that people experience as they acquire identities associated with established institutions in the society, whether for typical or problematic behavior.

Because he was concerned with mental hospitals in particular, the career stages Goffman (1959a) identified were “pre-patient,” “in-patient,” and “ex-patient.” These statuses, he argued, are acquired by mental patients regardless of differences in their backgrounds. Similarly, in our study, we find that despite differences (described in chap. 3) in age, race, ethnicity, and social class, the children we observed had all begun to accrue the preclinical status of person with autism. For these children, what we call the “in-clinic” (rather than “in-patient”) phase involved an evaluation to determine whether or not they qualified for the diagnosis.

Like Goffman (1959a), who focused primarily on the middle stage, we concentrate on the in-clinic experience of diagnosis—the stage that has thus far been explored in least detail. And like Goffman (1959a), whose study did not extend to ex-patient processes, we do not follow the postclinic part of a child’s career after autism diagnosis. That career unfolds in family, school, and employment contexts and may involve further clinic visits, hospitals, insurance determinations, welfare bureaucracies, and criminal justice agencies (cf. Maynard 2019; Maynard and Turowetz 2020)—all of which merit research in their own right but are beyond the scope of our present investigation.4

Nevertheless, we can say a little more about the preclinic career of an autistic child. Most of the children we observed came to a point where behaviors or developmental delays became concerning enough that their parents decided to seek professional help. In some cases, the parents themselves suspected something was not quite right. For example, some noticed that their child was behind other children in motor or speech development or that the child was stuck in what the parents had initially dismissed as a developmental “phase” that would eventually pass. In other cases, it was a friend, family member, or teacher who first raised concerns about the child’s development. In still other cases, it was the child’s pediatrician who suspected something was amiss. Sometimes these early red flags prompted a quick referral to CDDC for an autism evaluation. Other children followed a more circuitous path to the clinic, one that might have run through the offices of occupational therapists, neurologists, and psychologists before someone recommended or made a referral to CDDC. During this time, parents might have begun to reinterpret the child’s early troubles as signs of a possible psychological disorder, even if they did not yet have a name for it. In doing so, they started the process of reorganizing the child’s biography around turning points that led to professional intervention.

By the time they arrived at CDDC, many parents had stories about differences they had noticed in their child early on, such as repetitive behavior, tantrums, and failure to meet developmental milestones like walking and talking. In Dan’s case, his mother reported that he was a fussy baby who by age one was constantly inserting objects into outlets, throwing things, and having meltdowns. Although granting that such challenges “are typical toddler behaviors,” Betsy Chapman, Dan’s mother, also stated (as paraphrased in Dan’s medical report), “The frequency and severity was greater than would be expected for a child at this age.” She explained that Dan required everything—such as his collection of Hot Wheels cars—to be put in order and became upset otherwise. Betsy also shared concerns about his limited social interactions: the playdates she arranged between Dan and other children were unsuccessful, and he usually preferred to play by himself, leaving him without any friends apart from his sister, with whom he often quarreled.

A Day at the Clinic

We met Dan and his mother in the early morning hours, shortly before his evaluation was to begin. As they sat in the clinic’s waiting room, the professionals with whom they would be working handled administrative matters and prepared examination materials. At CDDC, things tend to move at a fast pace. Schedules are tight and often need to be rearranged at a moment’s notice to accommodate families arriving late to their appointments or cases that take longer than expected. Working in teams, clinicians...