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A network of expertise

On intertwined knowledge in autism spectrum disorder assessment reports
Un réseau d’expertise. À propos des connaissances co-construites dans les rapports d’évaluation des troubles du spectre de l’autisme
Sivan Gal-Rosberg et Karin Zetterqvist Nelson
p. 87-102

Résumés

L’article traite d’une analyse approfondie de quatre rapports d’évaluation documentant la procédure de diagnostic du trouble du spectre de l’autisme (TSA dorénavant) chez les enfants à l’âge de l’école maternelle en Suède. Rédigés par des professionnels (pédopsychiatres et pédopsychologues), ces rapports contiennent un compte rendu des différentes observations, entretiens et résultats de tests effectués tout au long d’une procédure de diagnostic TSA, ainsi que des recommandations de traitements et de plans d’interventions, avec une fonction “mobile,” c’est-à-dire qu’ils atteignent d’autres professionnels et non-initiés autres que les parents de l’enfant, pour que leur impact soit plus durable. L’objectif général de cet article est de démontrer la façon dont les savoirs professionnels sont étroitement liés aux connaissances parentales ou à “l’expertise intime” unique des parents (Lilley, 2011) dans les descriptions écrites constituant les rapports d’évaluation, lorsque les professionnels essaient de rendre compte et d’établir un diagnostic TSA pour un enfant spécifique. Notre conclusion est que des connaissances ainsi co-construites peuvent être comprises comme la matérialisation et la démonstration empirique de la présence d’un réseau d’expertise en autisme (Eyal, 2013), qui remplace les formes historiques précédentes de l’appropriation par les acteurs professionnels des connaissances parentales durant la procédure du diagnostic TSA chez les enfants (Eyal et al., 2010: 177).

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Notes de l’auteur

Acknowledgments

We would like to thank Cecilia Lindgren, Sofia Littmarck and Peter Holmqvist from the Department of Child Studies at Linköping University for their feedback and comments on this article.

Texte intégral

1. Introduction

1The following article discusses an in-depth analysis of Autism Spectrum Disorder (ASD henceforth) assessment reports documenting the diagnostic procedure of four pre-school-aged children in Sweden. The reports are meant to establish an ASD diagnosis for a particular child by providing a detailed account of the diagnostic procedure and its results. In the center of our analysis are professionals’ written knowledge claims of a specific child in the reports, as we argue that these claims include mostly intertwined knowledge, which entails inseparability between professional and parental knowledge.

2ASD assessment reports are a form of clinical documentation with two primary purposes. Firstly, the report is added to the assessed child’s medical records as an account of ASD diagnostic procedure and results, and secondly, the report is handed over to the parents to use as support in seeking out treatments for their child in school and other placings, or for further assessments. In one of the analyzed reports for this study, the latter was spelled out as such: “the aim of the assessment report is partly to provide you with a secondary source of information of the diagnostic procedure, beyond the verbal account you received by the professional, and partly for you to be able to go back and look at it in the future if there is something you are wondering about regarding the current assessment.” Moreover, it was stated that the report should be provided to others who come in contact with the child in question, such as teachers and educational staff, psychologists, therapists or “others who need to understand your child.” This “mobile” function, which guarantees that the document continues representing children and their families in other occasions, is of central motivation for the analysis discussed in this article.

3The lengthy descriptions of procedures in the assessment reports draw on the involved clinicians’ professional knowledge, with recurrent references to test results and criteria from the Diagnostic Statistical Manual’s (DSM-V henceforth) definition of ASD. However, the assessment reports also include frequent references to parents' accounts of their child’s behavior in daily family life, their descriptions of their child’s early development, and their child’s specificities in terms of strengths and difficulties. Despite the small sample of four reports, each report provides comprehensive, rich, and multifaceted data, which, following an in-depth analysis, allows a discussion of the complex relationship between two seemingly different epistemologies – parental knowledge and professional knowledge – which, in the reports, are woven together into what we refer to as intertwined knowledge. We argue that the intertwined knowledge demonstrated in the reports is a materialization of the network of autism expertise, as proposed by Eyal (2013).

4In the following sections, we provide a short account of ASD diagnostic procedures in Sweden, followed by a review of previous research and theory regarding relations between parents and professionals concerning autism expertise, and finally, a discussion of the analyzed assessment reports as “active documents.”

2. Assessing autism spectrum disorder

  • 1 Habilitering och Hälsa.

5In the last few decades, ASD diagnosis, associated with social interaction and communication problems and repetitive behavioral patterns (APA, 2013), has become more common among children, both in Sweden (CES, 2017; Lundström et al., 2015; Nygren et al., 2012) and internationally (CDC, 2020). In 2020, the US-based Centers for Disease Control and Prevention estimated that 1 in 54 children had been identified with ASD (CDC, 2020). In Sweden, ASD diagnostic procedures are highly individualized and vary from one child to another, depending on age, development, health status, and other considerations. However, to determine a diagnosis, a certain number of “symptoms” are required within language development, social communication, and general behavior, a procedure based on requirements outlined in the DSM-V (County council of Stockholm, section for childhood disabilities, 2018).1 A formal assessment usually includes parents’ interviews, a physical, neurological and psychiatric assessment, an examination of the child’s particularities in different areas, like language skills or motor skills; and lastly, informing the parents, educational staff, and others who come in contact with the child on the child’s diagnosis.

3. Autism – from professional monopoly to a network of expertise

6Although autism as a condition had been considered a “recognizable entity” (Frith, 1989: 15) for many decades, autism research is currently an ongoing and expansive area of investigation, demonstrating how questions concerning the “nature of autism” are still unanswered (see Baron-Cohen, 2002; Happé, Ronald & Plomin, 2006; Lichtenstein et al., 2010; Miles, 2011). From the social science and humanities, a growing number of research studies concerned with the diversity of symptoms and cognitive characterization of ASD have addressed the cultural and historical aspect of autism (Nadesan, 2005; Eyal et al., 2010; Silverman, 2012), emphasizing changes in diagnosis procedures, policies, and other social developments and changes. Instead of getting caught up in a (hopeless) discussion of ASD as a “real or provisional label” (Eyal et al., 2010: 13), sociologist Gil Eyal and colleagues draw on Ian Hacking’s discussions about autism as a “classification-in-motion” (Hacking, 2010: 640) and more specifically, the ongoing interaction between psychiatric classifications on the one hand, and those who are classified on the other hand (Hacking, 1999: 102-4). According to Hacking, the diagnosed child is located within a larger “matrix of institutions and practices surrounding this classification” (ibid.: 103), which relate to the diagnostic classification continuously, in ways that loop back to professional expertise and scientific work involved in autism research and expertise.

7Eyal et al. argue that significant factors contributing to the increase in ASD diagnosis relate to an intricate “spiral of looping processes” arising after de-institutionalization processes in the 1960s (2010: 258). The effect of de-institutionalization was not simply the replacement of psychiatrists as the main experts in regards to ASD by other professions, such as psychologists, occupational therapists, and teachers in special education, but a complete “rearrangements of the relations of expertise” (ibid.: 156), which included a close alliance between professionals and parents. Professions like occupational therapists and educational psychologists offered programs and training schemes for children with autism which demanded total parental involvement. The professional efforts had aimed to change the child’s behavior in daily routines of everyday life, thus requiring parents’ absolute commitment. These calls for parental involvement in professional treatments and teachings of children with autism were in line with the demands articulated by the ongoing formation of parents' movements, motivated by parental dissatisfaction with services and treatments offered to their children. Parents’ organizations’ wish for alternative approaches were met by the growing number of new professionals, such as behavioral psychologists and occupational therapists, who offered therapies that could be carried out in a home setting, thus “blurred the distinction… between lay and experts” (Eyal, 2013: 868). Moreover, parents’ detailed reports of their children’s communicative particularities and unusual behavior were also necessary for clinical diagnosis and scientific capital (Eyal et al., 2010: 177). Today, Eyal et al. (2010) and Eyal (2013) continue, expert knowledge of ASD has become closely bound up with the democratization of expertise and the conceptual apparatus of professions (Eyal, 2013: 876). Eyal argues that the power of experts today is no longer based on “professional monopoly” and authority and control but on the ability to cooperate with parents or to put “together a network that produces, reproduces, and disseminates expert statements or performances” (ibid.: 875). Moreover, this network of expertise is more powerful and influential than experts, meaning, professional individuals, “by virtue of its capacity to craft and package its concepts, its discourse, its modes of seeing, doing, and judging, so they can be grafted onto what others are doing, thus linking them to the network and eliciting their cooperation” (ibid.). As such, parents of autistic children, who were previously taken to be “the least credible, the most discredited, of all witnesses” in the early and middle of the twentieth century, in the wake of Leo Kanner’s initial reports, are now a self-evident part of a “network of expertise” concerning children diagnosed with autism (Eyal et al., 2010: 176). This study draws on Eyal’s theoretical discussion of today’s “network of expertise” in the Western world concerning children diagnosed with autism and parents’ pivotal role in both diagnostic procedures and treatment programs. The Australian social anthropologist Lilley (2014) approaches Eyal et al.’s discussion of a network of expertise and the so-called “democratization of expertise”, although she calls into question the notion of experts being on equal footing with parents (see also Lilley, 2011, 2014). For the current discussion of ASD assessment reports produced by professionals, we cannot assert any claim regarding the power relations and parental experiences of assessment procedures. However, we wish to highlight Lilley’s conceptualization of “intimate expertise.” In her research (2011), she interviews mothers of children who were diagnosed with ASD and recognizes the demand that “someone do the research and the running around” as a result of the “the numerous complications of helping individuals with ASD and the inadequate support offered by medical, educational and service sectors” (ibid.: 214). Thus, the concept of “intimate expertise” (Lilley, 2011), she proclaims, represents the combination of clinical and professional knowledge parents acquire over time from child health services, literature, and the Internet regarding ASD category, and additionally, their practice-based knowledge of their child evolving from living together and “doing family” (Morgan, 2011). In Lilley’s conceptualization of intimate expertise, she stresses its driving logic as individualizing; thus, although parents draw on professional knowledge of autism, and by that also acknowledge the benefits of employing “categorizing knowledge necessitated by diagnosis” (ibid.: 210), parents insist on differentiating their child and emphasizing their unique challenges and strengths-based on their intimate knowledge. Lilley conceptualizes intimate expertise as “new” expertise owned by parents, based partly on knowledge based on parental practices and partly on knowledge derived from a professional discourse. In our analysis of ASD assessment reports, the conceptualization of intimate expertise is a useful theoretical tool in discussing how these two seemingly distinct epistemologies (professional and parental/intimate) are intertwined, thus representing, essentially, the production, reproduction, and dissemination of professional knowledge needed for the expansion of the network of autism expertise (Eyal, 2013).

8Recognizing parents’ pivotal role in ASD diagnosis and care, interactions between parents and professionals have been previously explored in situ based on video-recording of the interactional negotiations during ASD diagnostic procedures. Maynard and Turowetz (2017), in a study using audio and video recordings of clinical visits from 1985 and 2011-2014, argue that the practice of ASD diagnosing is a narrative since “clinicians engage in concrete forms of storytelling to rule ASD in or out for a given child” (ibid.: 254). The study reveals that parents often display alignment- and even produce complementary stories that support clinicians’ stories- based on their knowledge of their child. Analyzing conversations in first assessment appointments for ASD diagnostic procedures, O’Reilly et al. (2016) examine the nuances of the interaction between parents and professionals in ASD diagnosis procedures. Their study demonstrates how parents employ intimate knowledge of their child in arguments that “builds a case” for a possible ASD diagnosis early on in the diagnostic procedure (ibid.: 4). Professionals were then “positioned to ratify or contest the cases built by the parents” (ibid.: 22). Although somewhat contradictory as for which side introduces the possibility of ASD diagnosis, both studies by Maynard and Turowetz (2017) and O’Reilly et al. (2016) stress not only the relevance of parental knowledge but of parents-professionals interaction and collaboration for the purpose of establishing and accounting for an ASD diagnosis for a specific child.

9In the current study, we examine ASD assessment reports as we probe into the manifestation of professional and parental knowledge in these reports, written by professionals as part of their assessment and diagnosis work and given to parents for future use.

10In Angell and Solomon’s (2014) study of parents’ participation and interaction with professionals, they discuss children’s health records as “material-discursive artifacts” (ibid.: 50), aiming “to illuminate ramifications and consequences of the ‘social life’ of records” (ibid.: 55). In their study, Angell and Solomon focus mainly on the parents’ ways of dealing, practically and emotionally, with the content presented in these assessment reports. In the current article, the main interest concerns the documents, not how the involved actors perceive them. In line with Kelle, Seehaus and Bollig study based on a close-up analysis of child health records (2015: 185-6), we approach children’s ASD assessment reports as “socio-material objects serving as mediating documents in practical processes” (ibid.: 185). Kelle, Seehaus and Bollig refer to the concept of instrumentation (Bollig, 2008 in Kelle, Seehaus & Bollig, 2015) to strengthen the idea of “active texts” as texts that are both affected and affect people’s ongoing daily activities. Instrumentation refers to the instrumental character of health records and, more importantly, the “decisive quality of documents in instrumenting institutional practices is their potential to transport effects from one place to another” (Kelle, Seehaus & Bollig, 2015: 188). Instrumentation, therefore, calls for tending to such documents as artifacts that travel, thus making the documents into “active agents in the production of social life” (Prior, 2016: 173). This study is further motivated by ASD assessment reports’ social role as active documents that have the capacity to “act.” Based on an in-depth analysis, we discuss the different ways professionals incorporate parents’ intimate expertise in their professional accounts on a textual level. We aim to illuminate and discuss the intertwinement of parental and professional knowledge as a significant component of the new network of autism expertise (Eyal, 2013). This analysis of ASD assessment reports is motivated and critical since these unique documents and texts play a meaningful role beyond the professional context.

4. Method

4.1. Data

  • 2 The material was collected by the first author (SG) as a part of her master thesis at Child Studies (...)

11The four assessment reports of preschool-aged children diagnosed with ASD are unique documents.2 These assessment reports were collected using snowball and opportunistic sampling (Bryman, 2016). Information about the study was published on several Facebook groups for parents of children diagnosed with ASD in Sweden. Further, information was provided to a principal of a primary school, who offered to spread information about the project. Eventually, four families had agreed to be contacted to discuss the possibility of contributing to the study with their child’s ASD assessment report. The parents received detailed information sheets about the study, followed by a phone conversation about the study’s aim and methods and the researchers’ role. Finally, they were informed about the procedures at Linköping University concerning data protection, privacy, and anonymity (GDPR), how to gain the child’s consent for the study, and the parent’s right to withdraw their consent at any time without providing a reason. The prospect of obtaining consent from the children was discussed with the parents, who emphasized the difficulty of getting the children to understand the research project’s aim and meaning due to communicative challenges. Therefore, written consent was obtained only from the parents. The documents were printed out, kept as hard copies, and stored safely (not on computers or other digital devices). All kinds of vital information concerning the child’s or parents’ identity were excluded from quotes and accounts in the analytical process.

12The four assessment reports had been written up by professional agents involved in child psychiatric assessments and treatments at four different clinics in one Swedish city. Each document varies in length (from three to 12 pages) and structure (different sections and headings). The four reports are authored and signed by several professional agents in what appears as a collaboration. However, it was seldom evident how the different professional groups had divided their responsibility, even if two or more professionals signed the report. The four reports contain medical information about the pregnancy and the child’s birth and an account of a doctor’s physical examination in the clinic, including information about specific medical issues of the child. All reports include a description of the clinical assessment procedure and an account of the child’s behavior at the clinic. Moreover, information based on teachers’ reports is also part of all reports. Finally, in all reports is information based on parents’ stories and accounts of their child, including a description of what made the parents seek child psychiatric aid for their child and what the parents deemed as their child's “main problems.”

13Beyond the similarities, each report was different in content and structure. Two reports were characterized by a concise and problem-focused medical language style, while an everyday language style marked the other reports. Each report was divided into several sections, including a background and summary section. However, the sections between the background and summary, mainly containing descriptions of the diagnostic procedure itself, were organized in various ways.

14The complexity of each report, in terms of both scope and content, as well as linguistic style, justified the limited set of four assessment reports. We aim to focus the analysis on how a network of expertise materializes on a textual level, calling for an in-depth analysis using close-up attention to details in each text. We do not maintain any general claim about such reports. Instead, our interest concerns how seemingly different forms of expertise are woven together at the textual level, which, for analytical reasons, calls for a small but rich sample of reports.

15In table 1 below, the four reports and the children (pseudonyms) are introduced.

Table 1. Pseudonyms and ages of the diagnosed children discussed in the reports.

Name

Age

Tom

3 years-old

Benjamin

5 years-old

Alexander

3.5 years-old

Phillip

5.5 years-old

4.2. Ethics

16ASD assessment reports contain sensitive child psychiatric information with detailed descriptions of test results and diagnostic matters, which requires careful ethical considerations. For the original thesis, the collecting and storing of data was examined and approved by an informal local ethical committee at Linköping University (March 2020). For the analysis in this article, parent consent has been renewed via email and telephone contact. The parents expressed their appreciation of the research interest in ASD assessment reports. Nevertheless, we wish to raise an ethical dilemma concerning the role and status of children in ASD assessment reports. In our analysis of these assessment reports, we focus on knowledge claims concerning a child provided by parents or professionals, while the child as an individual in its own right is both invisible and silent, despite the child’s central role in the assessment procedure. Certainly, we could state that this “invisibility” correspondingly reflects the child’s participation in the assessment reports. However, by not acknowledging the invisible and silent role of children in the assessment procedure, we maintain a practice in which children are subordinated to the normative yardstick of “developmental thinking” (Wong, 2004). Nonetheless, our analysis of intertwined knowledge demonstrates how parental knowledge contributes significantly to ASD assessment reports. Such knowledge is based on the assessed child’s everyday practices, challenging the normalizing effects of the medical and psychometric views and measurements (ibid.).

4.3. Analysis

17The analysis of the assessment reports focuses on professionals’ written knowledge claims of an assessed child. In assessment practices, knowledge of the child under assessment can be gained in different ways depending on available tools, locations, and circumstances. For instance, it is possible to gain knowledge of a child’s alphabet recognition using specific diagnostic tools, and it can be carried out at home, at preschool, and within the clinic. The reported results can then be added and incorporated into the assessment report. However, in order to gain knowledge of a child’s personal qualities or behavioral habits, observations and interactions over time are required. In that circumstance, parents’ knowledge becomes indispensable for the assessment. Parental knowledge draws on affective commitment (love), lengthy observations from daily life activities and various interactions in diverse locations and situations, familiarity with their child’s unique developmental trajectory, which altogether builds the intimate relationship between a parent and a child.

18The analytical process included content analysis, aiming to identify and map out the instances in the reports when the child was in focus, specifically when knowledge about the child was articulated. The second step of the analysis was scrutinizing these instances in more detail to identify how professionals described and accounted for their knowledge of the specific child. In the reports, professionals present themselves as authors who, based on their professional expertise, provided a solid declaration of the results and findings of the diagnostic procedure. However, it was evident that parents’ knowledge was also accounted for by the professionals in an intriguing manner due to the writing techniques displayed in the text. After a thorough text-based close-up examination and analysis of each instance, a pattern began to take shape. In their account of the results and observations generated in the assessment procedures, the professionals used parents’ knowledge in different forms, resulting in the intertwined knowledge identified in the reports, presented in more detail in the next section.

5. Findings

19A significant finding of the analysis was the usage of what we have defined as “informal” language. Such “informal” language was revealed through an initial read of the documents, exposing an unformulated, unstructured, and ununified character of the reports. In that, we mean that each report was substantially different from the other in structure and form. The results of the tests, questioners, and observations included in the assessment were not provided formally (many of the tools and tests within ASD diagnosis produce a numeral score, for instance), but instead, the observations and results of the tests were presented in an unstructured form. For instance, within one paragraph or section, the author may use short and concise descriptions and clinical and theoretical concepts and terms, as well as lengthy, descriptive depictions with the use of ordinary “everyday” language. “Informal” language includes a level of flexibility that allows the author the possibility to shift between different topics and issues within a paragraph or section. For instance, in a section meant to report the physical examination conducted by a physician in the clinic, descriptions of the child’s situation at school may be presented. Such form “opens up” new possibilities in accounting for an ASD diagnosis for a specific child and paves the way for the intertwined knowledge discussed further. In the following sections, we will provide a descriptive account of how parental and professional knowledge are incorporated and woven together into the assessment reports, thus creating what we define as intertwined knowledge, which we recognize as one meaningful form of materialization of the network of autism expertise (Eyal, 2013).

20Intertwined knowledge in ASD assessment reports

  • 3 All names presented in the article are pseudonyms.

21In the following sections, we utilize several extracts from Tom, Benjamin, Alexander, and Phillip’s3 ASD assessment reports to demonstrate intertwined knowledge in ASD assessment reports (see table 1). All children come from middle-class families and have two parents – a mother and a father.

22We begin by examining the following extract from Phillip's assessment report, under a section titled “Summary and Assessment”:

Phillip is a 5.5-year-old boy who has undergone neuropsychiatric investigation with the question of issue of Autism Spectrum Disorder. Anamnestic shows that he was quite early in development regarding language and motor skills but had difficulties with interaction and play. Phillip has a hard time understanding that others can think or feel differently than he does and has a hard time reading other people’s emotional expressions.

23In this example, informal language features mentioned above can be seen, such as alternating topics within a paragraph. However, especially interesting here is the different writing styles used by the author. In accounting for an ASD diagnosis, the author presents information attained with the use of diagnostic tools, as well as parental knowledge. Knowledge regarding the child’s problem gained with the use of diagnostic tools, such as clinical observations and parents’ reports, is provided to the reader with the use of clinical concepts (“neuropsychiatric investigation”), as well as with claims based on professional expertise such as child developmental theory (“he was quite early in development”), meaning, with a clinical style of writing. The same extract further contains a descriptive depiction of the child problem, with the use of lay concepts (“has a hard time”) as well as claims of profound knowledge of a child; his struggles in perceiving others’ thoughts and feelings, which, it can be argued, can only be gained through prolonged and thorough observation of his behavior and particularities. Although clinical observation can indeed claim to suspect such insight, it is with parental knowledge that one can, with greater confidence, claim to know it. In this extract, informal language, particularly changing writing styles, including clinical concepts at times and everyday language at others, helps blur the boundaries between parents’ and professionals’ knowledge claims utilized within the accounts in the report.

  • 4 ADOS-2 is a type of standardized assessment instrument commonly used in ASD diagnostic procedures.

24An essential aspect of intertwined knowledge in the reports is the flexibility, possible with informal language, of accounting for the source of knowledge of each knowledge claim. Take, for instance, the following extract from a section titled “ADOS-2”4 in Alexander’s assessment report:

[…] however, there is mostly stereotypical play with blocks that he lines up, (he) is interested in cause-and-effect toys when they are shown. Alexander clearly has repetitive and stereotypical interests (numbers, letters, blocks).

25In this depiction of the child’s play, clinical concepts at use demonstrate the employment of DSM-V criteria (“repetitive and stereotypical interests”) and therefore imply that the source of this knowledge claim may arise from a clinical assessment of the child’s playing habits and routines. However, the preceding description of Alexander’s playing style signifies a profound understanding of the child’s preferences and particularities, likely to be gained by the child’s parents and their extended and detailed observations from their daily life with a loved child. Parental knowledge, in this case, includes parents’ knowledge of their child’s unique playing habits and preferences. This sort of knowledge claim, comprised of professional and clinical concepts and DSM-V criteria, combined with parental knowledge, is one manifestation of the intertwined knowledge identified in the report.

26Similarly, in a different section in Phillip’s assessment report, under the title “behaviors and special interests,” the child’s particularities are described in the following way:

He is not impulsive, rather cautious, but cannot sit still. Wobble and move while they watch TV or read. He is distracted at times and doesn’t respond at all when spoken to. If he does not want to, he is difficult to get along with. If he is interested in something, then he gets involved.

27Here too, is an example of how the ununified structure of ASD assessment reports does not confine the author to clarify the grounds of the knowledge claim presented nor the specific assessment on which the claim is based. The professional’s claim that Phillip is “not impulsive, somewhat cautious, but cannot sit still” seems to be based on an observation of his inability to “sit still” while watching TV. However, in reading the text carefully, it seems that the knowledge claim that precedes the description of observation a profound knowledge of Phillip’s qualities and particularities – was likely to be gained by his parents at home and in other diverse settings. Nonetheless, it is with the word “they” that one comprehends that the knowledge claim is, in fact, based on an observation in which the professional author did not take part. Instead, the knowledge claim is based on parental observation and profound knowledge of their child, drawing on the lived experiences of the family with the child since birth.

28Moreover, in other parts of the assessment reports, professionals’ knowledge claim seems to be based on what Lilley (2011) defines as parents’ intimate expertise, a combination of parents’ practice-based knowledge of their children and their knowledge of ASD category. For instance, in the same section “behaviors and special interests” in Phillip’s report, it is written:

He fixates on different interests. At the age of 1-2 years-old, it was traffic lights, he drew them and lined them up and did not need any other toys. He is curious and likes facts about dinosaurs, for example. He writes down names and other facts. Writes lists of other things as well.

29In this extract, the topic of fixations and limited interests, grounded in ASD criteria within DSM-V, indicates that the assessment on which the professional knowledge claim“He fixates on different interests” – is based on clinical observation. However, a careful look into the extract's content indicates that the claim is based on a more extended observation, that minds changes in the child’s behaviors throughout the years – indicating parental knowledge. Parental knowledge in this example indicates profound knowledge of a specific child’s particularities and familiarity with DSM-V criteria, which determines that the child’s specific playing habits and preferences correspond with ASD criteria. This finding is an intriguing demonstration of the combination of professionals’ knowledge and parental knowledge performed in the text using informal language. Interestingly enough, parental knowledge in this example is partly based on professionals’ knowledge (DSM-V criteria) and the family’s lived experience. Thus, at this point, it becomes almost impossible to identify any boundaries between the different types of “knowledge,” demonstrating more distinctly the network-like qualities of autism expertise with blurry boundaries and flat hierarchies.

30Knowledge claims based on parents’ “intimate expertise” will therefore include profound parental knowledge of their child in relation to ASD criteria, exemplified in the following extract from Benjamin’s assessment report, under a section named “psychological assessment”:

The parents describe (that) Benjamin gives good eye contact with them, he shows varied emotional expressions, and reads the parents’ expressions well.

31Similar to the preceding extract from Phillip’s report, in the example above, knowledge is intertwined, and boundaries between parental and professional knowledge are nearly absent. Unlike some of the examples provided above, in this case, the author points directly to parents’ descriptions by using the words “the parents describe” at the beginning of the sentence, signifying the source on which the knowledge claim is based – the parents. However, although the knowledge claim is based on parental knowledge, knowledge in this example is intertwined as it is based not only on parents’ observation and parental knowledge based on lived experience but on parents’ “intimate expertise,” which includes their understanding of what is considered “good eye-contact” and what counts for a “good” amount of “varied emotional expressions.” Therefore, this extract demonstrates intertwined knowledge in ASD assessment reports, as knowledge claims seem to be based on parents’ “intimate expertise,” which, to a great extent, is based on ASD criteria and professional expertise. The use of parents’ “intimate expertise” in accounting for an ASD diagnosis in assessment reports is a central element of intertwined knowledge. As such, it also allows the professional author to present unified pedagogical strategies as seen under the same section in Benjamin’s report:

The parents have created a routine at home using different activities, so that Benjamin does not just sit with trains and cars.

32In this example, parents’ “intimate expertise” involves knowing which routine is the preferred routine for their child based on their parental knowledge and knowing the proper routine based on the professional expertise of ASD, which involves “different activities” as opposed to “narrow” activities.

33An intriguing example of the use of informal language in the reports is seen in Tom's assessment report, under a section titled ‘Doctor Assessment’ in which the use of informal language contributes to intertwined knowledge in several ways:

At preschool, the patient plays by himself, uninterested in other children. Likes to play with vehicles, blocks, Lego, constructions. He is interested in numbers, letters. Gives limited contact. Difficult with transitions. Plays at home with the figures from Paw Patrol. According to the parents, not so much fantasy games, plays mainly by sorting, lining up toys. At home it is difficult with transitions, boundaries. Limited language, has only a few words, does not put together sentences.

34This extract presents multiple topics often addressed in ASD assessment records, such as play, social communication, interests, and language development. Moreover, both a clinical and an everyday writing style are used in the paragraph. Further, the source of knowledge claims is sometimes indicted (“According to the parents”) and sometimes not. An essential element of intertwined knowledge in the reports is simply the lack of separation between the different types of knowledge sources (parental/professional, based on clinical test/observation at home, for instance).

35Finally, another element of intertwined knowledge identified in the reports is with the professional author’s use of direct quotes of parents’ claims, based on their lived experiences with their child, like in the following example taken from a section named “psychological assessment” in Benjamin’s assessment report:

The parents describe that Benjamin was examined by a speech therapist and psychologist when he was 2 years-old, that signs of abnormalities were found but he still developed normally. Mom perceived that the development is as it should, until the moment she understood that Benjamin should be able to sit down. (She) noted difficulties when she hung out with other mothers with babies, Benjamin cried through those occasions (about 8-9 months old), was not an ordinary cry, but that his “eyes were filled with fright.”

36The professional’s focus demonstrated in this extract is on the parents’ lived experience in raising their child, stressing the growing and intensifying character of these difficulties, marked with “normal” development at an earlier stage, then worsening with time and age. At the end of the paragraph presented above, the child’s mother’s quote provides a disturbing image of the child’s worrying state (“eyes were filled with fright”) when in social interactions. We argue that the reference to parents’ challenging experiences by professionals, like in the example above, often in ways that signal unified strategies between professionals and parents, creates a level of partnership between professionals and parents in the text. This “partnership” is represented in the reports by the illustration of a shared understanding of the child’s problem, particularities, and specific needs, based on unified strategies and intertwined knowledge.

6. Discussion and conclusion

37This article discussed ASD assessment reports written by professionals who conduct ASD diagnostic procedures on preschool-aged children. These reports have a mobile function, meaning they are used by parents to communicate with teachers, therapists, and other professional groups involved in their child’s care and education. Drawing on a text-based analysis, explicitly focusing on professionals’ knowledge claims of a specific child, we identified that in the text, with the use of informal language, professional knowledge is closely intertwined with parents’ knowledge or what has been defined as parents’ “intimate expertise” (Lilley, 2011). Intimate expertise represents the clinical and professional knowledge parents gain over time from child health services, literature, and the Internet regarding ASD category, as well as their practice-based knowledge of their child. We propose that the intertwined knowledge identified in our analysis represents a building-stone in the network of autism expertise.

38The findings of this study must be considered in relation to cultural and historical contexts. Historically, the very “father” of autism, Leo Kanner, used parental knowledge in diagnostic processes. However, parents’ observations of their child’s particularities and behavioral patterns were not seldom considered evidence of parents’ failure to understand the child. These observations were also used to blame parents for their child’s difficulties. Eyal et al. (2010) had described this act as they trace the category of autism in previous decades: “through the discrediting of parental testimony the clinician was positioned at an obligatory point of passage in this network, from which he could appropriate parental reports, erase the work that went into them, and accumulate them in his hands as scientific capital” (ibid.: 177). In their book on The Autism Matrix, Eyal et al. continue to argue that these circumstances shaped the formation of parents’ movements and later on established new care policies, changes in the category of autism, and not the least, towards today’s network of expertise. Our findings are uniquely distinctive from Eyal et al. account of the historical “appropriation”; on the contrary, the intertwined knowledge identified in these reports seem to claim a level of “partnership” with parents in the domain of children’s ASD diagnostic procedures.

39Our analysis identified that the intertwinement of professional and parental knowledge in the reports is produced in several ways. For instance, in accounting for the child’s diagnosis, professionals who conduct the assessments and write down the assessment reports often refer directly to parents’ input or specify, often extensively, parents’ descriptions and experiences from everyday life as a family, beyond the clinical setting. Further, the professionals frequently use a writing style that combines clinical concepts and theories on the one hand, along with everyday language and lay concepts, on the other hand, contributing to the blurring of boundaries between professional and lay and the intertwinement of knowledge. Moreover, such informal language allows flexibility in accounting for the source of each knowledge claim used in the reports, which limits the reader from recognizing the boundaries of each actor’s so-called “distinct” knowledge.

40These findings illustrate changes in autism expertise and a different approach to knowledge and expertise, which “becomes more powerful and influential” as it implies the importance of partnership, “generosity,” “co-production,” and as it stresses a distinction between expertise and experts. We suggest that the intertwined knowledge identified in the reports is a materialization of the network of autism expertise proposed by Eyal (2013). The shift from the authority and control that was the core of the “professional monopoly” towards the generosity that characterizes today’s autism expertise is revealed in our analysis in several forms. Generosity relates to the exchanges between actors in the network of expertise, marked with cooperation and accessibility. This generosity is demonstrated, thus, by the professionals’ forthright reliance on parents’ observations in the private setting of the home and on parents’ estimations and input for accounting for an ASD diagnosis for a specific child. Generosity also relates to parents’ access to the content of the reports for its reproduction – the reports are obtainable for parents and are written and presented in a “layperson-friendly” manner that permits or facilitates their participation. The “co-production” that characterizes the network of expertise is illustrated in the reports with the production of knowledge claims that has blurred boundaries between lay and professional concepts and language, as well as between the source of each knowledge claim, which serves to ratify and stabilize professional expertise in the context of ASD diagnosis. Notably, the “mobile” function of the reports plays a critical role in their value within the network of autism expertise, as these documents often continue to “act” and represent the child many years after the diagnostic procedure had been finalized.

41This difference from the historical “appropriation” to “intertwinement” and “partnership,” or discrediting to crediting parents in contemporary Western settings, exemplifies how professionals’ approach towards parents of children diagnosed with ASD has shifted drastically from Kanner’s time to ours. The use of parental knowledge in ASD assessment reports demonstrates how parental knowledge is a highly beneficial tool for professionals when accounting for an ASD diagnosis for a specific child. The move from the contrasted “clear-cut” criterial DSM-diagnosis towards informal language that facilitates intertwined knowledge identified in these reports provides a solid, robust account for an ASD diagnosis from a professional position. Effectively, intertwined knowledge fortifies professionals’ knowledge claims regarding the child who is under diagnosis, enabling a more “confident” and secured accounting of the child’s assessment. Moreover, this notion does not proclaim parents to be merely passive actors who are deprived of their unique knowledge. Several studies have demonstrated how parents who participate in ASD diagnosis procedure, seeing the fluidity of the diagnostic category of ASD, negotiate and modify the meaning of their child’s diagnosis depending on context and circumstances (Lilley, 2011; Angell & Solomon, 2014; O’Reilly et al., 2016; Maynard & Turowetz, 2017). It is, therefore, plausible that for parents, being recognized as an equal part of accounting for the child’s diagnosis works to construct the position expected from them as autism parents (Silverman, 2012) and in claiming their intimate expertise (Lilley, 2011). Nevertheless, our analysis does not claim to have earned any insights about parents’ perceptions of the topics discussed by the professionals in the reports. We maintain, therefore, that an in-depth inquiry of parents’ understandings and meaning-making of their child’s ASD diagnostic procedure and relations with professionals throughout these procedures may contribute to a much deeper understanding of the network of autism expertise and ASD at large. 

42Finally, we wish to point out a critical concern to be discussed further, namely the lacking of children’s voices in ASD assessment reports. As previously suggested, the “silent” voices of children in our analysis signify the same lacking seen in the reports. However, we hold that similarly to professionals’ and parents’, children’s voices are an inseparable part of the network of autism expertise. We maintain, moreover, that an approach that strives to identify children’s voices within the intertwined knowledge making up the new autism expertise is undoubtedly essential.

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Notes

1 Habilitering och Hälsa.

2 The material was collected by the first author (SG) as a part of her master thesis at Child Studies, Linköping University. The present article is based on the same material, although focussing more specifically on one aspect of the assessment reports, namely how parental knowledge of the child’s communicative patterns and behavioral specificities is intertwined with professional knowledge. This aspect was not brought up in the thesis, although the thesis paved the way for the analysis carried out for the present article.

3 All names presented in the article are pseudonyms.

4 ADOS-2 is a type of standardized assessment instrument commonly used in ASD diagnostic procedures.

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Sivan Gal-Rosberg et Karin Zetterqvist Nelson, « A network of expertise »Alter, 17-1 | 2023, 87-102.

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Sivan Gal-Rosberg et Karin Zetterqvist Nelson, « A network of expertise »Alter [En ligne], 17-1 | 2023, mis en ligne le 17 mars 2023, consulté le 29 février 2024. URL : http://journals.openedition.org/alterjdr/1846

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Auteurs

Sivan Gal-Rosberg

Department of Social Work, Uppsala University
sivan.galrosberg[at]uu.se

Karin Zetterqvist Nelson

Child Studies, Department for Thematic Studies, Linköping University
karin.zetterqvist.nelson[at]liu.se

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