“For the first time someone understood”: A study of noncoherence and heterogeneity in a Swedish autism support and advocacy association

Abstract

Autism has come to be portrayed as something complex, ambiguous, and heterogeneous. I therefore contend that what is now needed are analytical tools to further explicate the modalities of this heterogeneity and ambiguity. I propose that one way forward is to draw on analytical vocabularies intended for analyses of the (non)coherence of phenomena, more specifically Law et al.’s concept modes of syncretism. I employ this concept to stage a theoretical intervention in the historiography of autism through a close reading of a booklet published by the Swedish Autism and Asperger Association to commemorate its founding 40 years earlier. The analysis shows that the booklet contained several discursive enactments of autism, and that different syncretic practices were used to handle and balance these. I also discuss how modes of syncretism can be useful as an analytical vocabulary for studying other contested and heterogeneous topics, diagnoses, and issues in psychology.

Keywords

autism conceptual analysis development history of psychology theory

The history, sociology, and philosophy of autism has come into intense focus in the last two decades (see for instance Bagatell, 2010; Dant, 2015; Evans, 2017; Eyal et al., 2010; Hacking, 2009; Verhoeff, 2013; Vicedo, 2021).¹ A recurring conclusion is that autism is, and historically has been, hard to once-and-for-all pin down. Hollin (2017) notes that the “claim of ubiquitous uncertainty in autism relates to the fact that not only is there no cure for autism, but also that the condition’s cause and manifestation remain hotly contested” (p. 210). Autism, claim Ryan and Milton (2022), is “brilliantly and impossibly diverse in terms of experiences, characteristics, ‘symptoms’, possible biological markers, and social contexts” (p. 1). Regardless of what we know about autism, we know, to quote Fitzgerald (2017), “that it is expansive, capacious, and varied” (p. 172). Heterogeneity, complexity, and ambivalence appear almost inherent to autism. My aim is not to proffer a better, more precise definition of autism that clears up the ambivalence and uncertainty. I instead find it a more pressing task to explore approaches that can help us analytically grapple with the modalities (the hows) of autism’s heterogeneity, ambiguity, and complexity.

I argue, and will empirically illustrate, that one productive way to do this is to draw on Law et al.’s (2014) concept modes of syncretism, which is specifically intended for analyses of the (non)coherence of phenomena. Modes of syncretism entail a performative understanding of ontology and epistemology, meaning that “realities . . . and representations of those realities are being enacted or performed simultaneously” (Law, 2008, p. 635). This stresses the situated nature of doing realities, through words, actions, and things, in specific historical, cultural, and material contexts. In relation to autism this means that questions of what autism is and how to define its characteristics and etiology—is it an illness, a developmental disorder, a normal neurological variation?—must be approached as empirical questions requiring detailed studies of situated discursive and material practices.

Furthermore, if realities are made—realized—through practices, then the coherence of different realities is not certain. Coherence has to be enacted, performed, achieved in practice, and it can take on many forms. This is where syncretism, originally denoting “the process of combining practices taken from different religious traditions” (Law et al., 2014, p. 175), comes in. Different modes of syncretism—different ways of combining practices—produce coherences and noncoherences that might, in a specific place and time, lend stability and endurance to a phenomenon. So, although autism has generally been ambiguous and uncertain—that is, noncoherent, but not incoherent (see Law et al., 2014, p. 174)—perhaps it has been so in different ways. And perhaps its temporary coherence and stability in specific contexts, giving autism a particular shape and content, have been undergirded by different sets of practices. I argue that modes of syncretism are a particularly useful analytical framework for examining the noncoherence of autism and exploring the ways in which it has been stabilized in different contexts.

To empirically illustrate how modes of syncretism can be employed analytically, and stage a theoretical intervention in the historiography of autism, I analyze a commemorative booklet published in 2013 by the Swedish Autism- och Aspergerförbundet (the Autism and Asperger Association; henceforth AAA²) to mark the 40-year mark of their founding in 1973.³ One reason for choosing this text as a suitable material to showcase the analytical value of modes of syncretism is that associations for and by those with autism, like the AAA, are a particularly productive focus for historical, sociological, and philosophical studies of autism (see Silverman, 2011). They often encompass, and have to consider, a variety among their membership of views and perspectives on autism as well as on the association’s purpose. Is autism caused by genetic factors, gastrointestinal issues, environmental toxins, or vaccinations? Is it a developmental medical disorder, or an atypical but still normal neurological variation? Should the emphasis be on developing better diagnostic procedures and treatments, or on providing support? Who should be prioritized, parents of children with autism or adults with autism, and are these groups necessarily opposed to each other? Studies of autism associations consequently offer prime opportunities to grapple with “autism in action,” that is to say, the differing enactment of autism realities in specific contexts.

My main emphasis in this article is on contributing theoretically and analytically to the historiography of autism, yet the national context of its empirical illustration is not irrelevant. Sweden is interesting in several regards, for instance concerning its relatively high rates of autism diagnoses but also the international impact of Swedish autism research (see Eyal et al., 2010; Littmarck et al., 2020).Yet there is still a dearth of historical and sociological studies of autism in Sweden (with the exception of several important studies on offshoots of the main part of the AAA, discussed in the literature overview below). This article thus also contributes to the writing of the global history of autism.

The booklet that I analyze was titled För första gången förstod någon – Från föreningen för psykotiska barn till Autism- och Aspergerförbundet (For the First Time Someone Understood – From the Association for Psychotic Children to the Autism and Asperger Association; henceforth FFT). It was a rather short text, 44 pages in all, and easily gives the impression that it was simply “a history describing the association’s development since the start 40 years ago” (Autism- och Aspergerförbundet, 2013, p. 3). But I argue that FFT was actually more complex than that, making it particularly suitable for illustrating how modes of syncretism can be a valuable tool for philosophical, historical, and sociological studies of autism. The booklet’s complexity lies in that it is possible to discern in it several interrelated discursive enactments: biomedical autism versus psychogenic autism; “pure” autism versus Asperger’s syndrome and heterogenous autism; scientific knowledge versus experienced-based knowledge and popular culture; and feelings versus knowledge. I show that the differences and tensions between the enactments were handled using distinctive syncretic practices, highlighting how modes of syncretism can be a productive analytical framework for studies of ambiguous, heterogenous phenomena such as autism.

In what follows, I first provide an overview of the history of autism and of autism support and advocacy associations. I then discuss my empirical material and its relevance for this article as well as modes of syncretism. This is followed by the actual analysis, after which I summarize my main analytical points and argue for the relevance of the analytical approach for explicating contemporary developments in the field of autism as well as for studying other complex and “fuzzy” topics and issues in psychology.

A history of autism, and of autism support and advocacy associations

There have been dramatic changes in how autism has been understood and explained. In the early 20th century, autism was seen as a schizophrenic defensive psychic process where the child withdrew into an excessive imaginary life to avoid an unsatisfying reality (Evans, 2013). But this changed in the 1940s when experts such as Leo Kanner agreed that children with autism were cut off from the external world but argued that the core of autism was not that the child “fantasized excessively” but that that they “did not fantasize at all” (Evans, 2013, p. 4), impacting their affective contact with others. The view on the cause of autism has also shifted. In the 1950s and 1960s a common—albeit also criticized—explanation was that autism was caused by emotionally withholding mothers (Vicedo, 2021). This view on autism’s causality gave way during the 1970s and 1980s to a neurobiological and neurocognitive understanding characterizing autism by impairments in social interaction, communication, and imagination (Evans, 2013). Yet, not everyone agrees with the framing of autism as an impairment, and there have been debates on whether autism, and its various forms, is to be viewed as a biomedical condition (or even disorder), or as a natural variation of a person’s neurological make-up (see e.g., Bagatell, 2010; Molloy & Vasil, 2002; Ryan & Milton, 2022). These wide-ranging historical changes have led many, from clinical researchers to philosophers, to reflect on what actually constitutes the core of autism and how to relate to its incessant redefinitions (see e.g., Chapman, 2020; Dant, 2015; Happé & Frith, 2020).

The history of autism has also been intimately intertwined with the work of autism support and advocacy associations (Chamak, 2008; Evans, 2017; Eyal, 2010; Silverman, 2011; Vicedo, 2021). They have provided support, secured research funding, created clinical and research networks, lobbied politicians, and promoted specific ways of defining, theorizing, and treating autism. Yet, such associations have also seen tensions and clashes. A main line of conflict has been (with a risk of oversimplifying) between parents of children with autism and adults with autism. The latter have criticized parent-dominated associations as being run by “neurotypicals” promoting a view of autism as a biomedical disorder, rather than as a form of neurological variation (Bagatell, 2010; Raz et al., 2018). Groups, especially within the autistic community, have consequently stressed an understanding of autism as “neurodiversity,” in contrast to a deficit-based model of autism (Bertilsdotter Rosqvist et al., 2020).

There are hitherto no studies on the Swedish AAA. It is, however, possible to sketch a broad outline of its history. The AAA was founded in 1973 and has today around 19,000 members, organized into 24 regional associations (Autism Sverige, n.d.). While the association states that it today encompasses families, professionals, as well as adults with autism, the AAA had a very strong emphasis in its beginning on parents of children with autism (Bertilsdotter Rosqvist et al., 2015). A broadening of the association’s membership did, however, start in the early 2000s, partly through the Empowerment project which aimed to strengthen the position within the AAA of those with an autism diagnosis and which has been studied by Bertilsdotter Rosqvist and Rosqvist (2014) and Bertilsdotter Rosqvist et al. (2013, 2015). The project ran between 2001 and 2004 and resulted, among other things, in the magazine Empowerment (2002–2009). The magazine led to, and supported, for instance, the articulation of nonneurotypical spaces and notions of sexuality and couplehood that questioned the perceived neuronormative perspectives and notions prevalent in the parent association. This highlights some of the possible tensions and fractures related to differing views on autism and their links to and overlaps with autism support and advocacy associations.

The apparent heterogeneity of autism has been emphasized by autism researchers and social scientists alike. Fitzgerald (2017) has shown that the neurosciences’ “failure” to deliver clear-cut answers to the question of autism is not necessarily a hindrance to the day-to-day work of researchers, which equally relies on their intuitive, affective, and practical engagement with the “messy” object of autism. Hollin (2017) similarly discusses that indeterminacy is central to scientists’ understanding of autism. Autism can take rather different forms depending on the individual, but it is also a matter of an intra-personal indeterminacy where it is impossible to single out one particular cause for all of an individual’s “autism symptoms.”⁴ Orsini and Smith (2010) analyze autism activism in Canada and the US, arguing that activists relate to knowledge in three ways to influence public policy: instrumental, contesting, and embodied. These are not discrete categories but rather “overlapping forms of expertise [that are] advanced when making policy claims” (Orsini & Smith, 2010, p. 51), highlighting how complexities have characterized the work of autism associations and activists, too.

Many studies hence show that autism has been described, explained, and worked upon and with in diverse ways, both historically and presently, and highlight its complexity, diversity, and heterogeneity. Yet, I argue that it is possible to push the analysis further and actually explicate how autism has been complex, diverse, and heterogenous in specific contexts. My aim is to illustrate that one fruitful way to do this is by employing modes of syncretism as an analytical framework.

Empirical material, and theoretical and methodological approach

The FFT booklet (Autism- och Aspergerförbundet, 2013) was published in 2013 to mark that four decades had passed since the AAA’s founding. It was 44 pages long and consisted of 34 sections detailing subjects and topics related to the AAA’s history, activities, and views. Each section’s layout typically had a main part consisting of text describing the topic in question. Alongside the main text there were often short interviews with current or former members of the association, examples of material on autism produced by the association, explications of important dates, and photos of influential members and significant events in the association’s history.

I have no insight into the editorial process behind the production of FFT (Autism- och Aspergerförbundet, 2013), but I do not see this as a hindrance as my aim is not to “peer behind” FFT as a text and reveal the social processes and contexts it occluded or concealed. Rather, I want to stay at the level of the text to trace how it enacted certain realities and contexts concerning autism and the AAA (cf. Asdal, 2015). I will show how a close reading of the text can highlight several discursive tensions and complexities—several noncoherences—concerning the AAA, its history, and its views on autism. Yet, as I will also demonstrate, these did not necessarily lead to explicit contradictions or conflicts. I instead draw attention to how potentially controversial and contradictory positions and notions in the text were modified into not being so, on account of different modes of syncretic practices. FFT is thus a productive case study for showcasing the fruitfulness of modes of syncretism as an analytical framework for analyses of ambiguous and indistinct issues and phenomena in psychology.

My analysis draws on Kristin Asdal’s performative understanding of texts (see, for example, Asdal, 2015). Texts are conceptualized as material-semiotic devices enacting realities—that is, doing things to and in the world—by offering narratives, stressing particular contexts, and providing specific framings. The analysis’ point of departure is the claim in FFT’s (Autism- och Aspergerförbundet, 2013) title: “For the First Time Someone Understood.” I want to unpack this claim by analyzing what FFT presented as being understood, who it was that understood, and for which purposes. This has led me to discern four sets of interrelated discursive enactments: (a) biomedical autism versus psychogenic autism; (b) “pure” autism versus Asperger’s syndrome and heterogenous autism; (c) scientific knowledge versus experienced-based knowledge and popular culture; and (d) feelings versus knowledge.⁵

These discursive enactments resemble some findings highlighted by previous studies (see e.g., Bertilsdotter Rosqvist et al., 2015; Silverman, 2011; Singh, 2015). However, I push the analysis one step further by also considering how each set’s enactments related to each other through employing modes of syncretism as an analytical tool. Syncretism originates from studies on how religious practices from differing traditions are combined but has been taken up in Science and Technology Studies for thinking about, understanding, and analyzing (non)coherence (Law et al., 2014). Whereas a particular situation or context may often encompass several different, coexistent practices, logics, discourses, or orders, the way they can relate to each other can differ. The alterity (or noncoherence) between them can thus be handled in different ways, depending on the syncretic practice. Law et al. (2014) provide several examples of such practices.⁶ Alterity can be denied, a simple refusal to acknowledge that things do not fit together regardless of the consequences. Or it can be separated, dividing the alterity spatially, temporally, or discursively so that the possibly noncoherent practices and logics never meet. Or the logics and practices can be put in conflict with each other, hoping that one side prevails and erases the undesirable fuzziness. But it can also be domesticated by, on the one hand, recognizing differences but also, on the other, trying to blunt, tame, and homogenize them so that they, at least precariously, cohere.

Modes of syncretism make it possible to move beyond saying that FFT entailed a complex, ambiguous, heterogenous enactment of autism and autism-related issues. I can instead show in detail how its discursive slippages and tensions were handled using different syncretic practices, giving us a fuller view of how the apparent heterogeneity of autism has been contended with in practice.

Analysis

In this section I employ modes of syncretism to analyze how FFT (Autism- och Aspergerförbundet, 2013) enacted the AAA’s own history, autism as a phenomenon, and different forms of knowledge about autism. The analysis is divided into two subsections. First, I highlight that FFT separated a scientific, monolithic, biomedical autism—which often was more-or-less directly supported by parents’ embodied knowledge—from an ideological, culturally inflected, psychogenetic, parent-blaming autism. I then show that the text also enacted an autism with shifting definitions, vaguer boundaries, and conflicting perspectives, and that it made use of both a denying and a domesticating syncretic practice to handle the more ambiguous and heterogenous form of autism. In the second subsection, I demonstrate that a collapsing syncretic practice was discernable when FFT discussed the relation between scientific knowledge, experienced-based knowledge, popular culture, and affects.

A progressive and biological, but ambiguous, autism

In FFT’s (Autism- och Aspergerförbundet, 2013) introduction, Eva Nordin-Olson, the then-current president of the AAA, noted that a primary reason for the association’s founding in 1973 was because “children with autism were so different, unusual and hard to understand” (p. 3). Neither parents nor professionals knew what to do. Even worse, parents were met with “ignorance, myths and ideologies” (Autism- och Aspergerförbundet, 2013, p. 3) and were blamed as the cause of their child’s autism. Sweden in the 1970s was enacted in FFT as a particularly backwards nation. In the early 1970s, the prevalent term in Sweden was “psychotic children,” whereas “the rest of the world spoke about autism” (p. 7), and “knowledge about autism was lacking in Sweden” (p. 8), with almost no literature translated into Swedish. The enactment of Sweden’s international backwardness can be contested. For instance, a central scientific outlet in the 1970s was the Journal of Autism and Childhood Schizophrenia where articles interchangeably used “psychosis,” “childhood schizophrenia,” and “infantile autism” (Silverman, 2011, pp. 39–40). However, the enactment in FFT of Sweden as a backwards nation supported the outlining of one of the AAA’s foundational tasks, namely countering myths in Sweden about autism. These were that autism was caused by “refrigerator moms,” designating emotionally unavailable mothers; that it first appeared in the 20th century and only in Western countries; and that children with autism had intentionally decided to withdraw from an evil world. The association instead stressed that autism was a “recognizable specific disability” (Autism- och Aspergerförbundet, 2013, p. 8). FFT also hinted about who was responsible for spreading the outdated, myth-like views. One of its sections described the 1990s as a point in time in Sweden of “great interest for autism” (Autism- och Aspergerförbundet, 2013, p. 17). However, some psychodynamic views still “lingered” and the section highlighted that the Swedish National Board of Health and Welfare had supported the AAA in stressing that interventions had to be based on “the scientific view that was now generally accepted” (Autism- och Aspergerförbundet, 2013, p. 17). The meaning of this, it went without saying, was that the psychodynamic views were neither scientific nor generally accepted.

FFT enacted Sweden at the time of the AAA’s founding in 1973 as dominated by unscientific and parent-blaming theories, or even myths, about autism that were intimated to come from psychodynamic thinking. In contrast, the AAA was enacted as a progressive force where parents and professionals “embraced the new knowledge about autism . . . and with coordinated forces succeeded in reaching out with that knowledge to decision-makers and professionals” (Autism- och Aspergerförbundet, 2013, p. 3). The association and its mission were closely tied to an enactment of autism as a particular, scientifically defined disability. This can be thought of as a syncretic (and rather parent-centric and nonneurodiversity-oriented; cf. Bertilsdotter Rosqvist et al., 2020) form of separation with an enactment of a clear inside and outside. On the inside: science, progressiveness, and compassion with parents. On the outside: myths, ideologies, and callousness to the needs of parents.

The separation was further bolstered by sections in FFT that enacted autism as transcending culture and history. The influential Swedish autism researcher, and also honorary member of the AAA, Christopher Gillberg (see Evans, 2017, pp. 352–353; 363–364) narrated his own journey into the field of autism research in one of FFT’s minor columns by observing that he, at the beginning of his career almost 40 years ago, had not realized that he had already met people with autism and Asperger’s syndrome;⁷ they just did not have such diagnoses at the time (Autism- och Aspergerförbundet, 2013, p. 9). Another section of FFT told a similar story of how Olle Mächs, president of the AAA from 1976 to 1987, and his wife had noticed very early on that something was different about their daughter, but “in the middle of the 1960s there was neither knowledge nor words to describe autism” (Autism- och Aspergerförbundet, 2013, p. 11). These sections enacted autism in a way that made possible a retrospective acknowledgment of autism as already, and always, being there, before scientific acknowledgment. Such a temporally ordered narrative has also been identified in other Swedish discussions of neuropsychiatric and neuropsychological diagnoses and conditions (Skagius, 2019). The ahistorical rendering of autism was, then, linked to the syncretic separation between on one side, the scientific, the monolithic, the eternal (which was sometimes detectable by perceptive parents) and, on the other, the mythical and temporal.

Yet the enactment of autism as a clearly defined, stable, and easily recognizable biological disability was not the whole story. There were other enactments in FFT that unsettled this rather smooth, coherent, binary separation, and hinted at a more complicated story. One aspect concerns the name of the AAA, which was changed several times between 1973 and 2013. These changes were seemingly rather minor events in the association’s history, at least if considered by the space allotted to them in FFT. Yet they have, at a closer look, a deeper significance. At the time of its founding in 1973 the AAA was called Föreningen för psykotiska barn (The Association for Psychotic Children), which FFT explained was due to Sweden’s backwardness. The publication stated that the association’s name change in 1990 to Riksföreningen Autism (The National Autism Association) was because “the term childhood psychosis [was at this point in time] completely replaced by ‘autism and autism-like conditions’” (Autism- och Aspergerförbundet, 2013, p. 17). This move uncoupled the association’s name from the field of schizophrenia-related disorders. As noted by Eyal et al. (2010, pp. 25–40), childhood schizophrenia has historically been interpreted according to a model of mental illness, whereas autism has come to occupy a more ambivalent position, unsettling and reshaping the distinction between “mental illness” and “mental retardation.” Through the name change, the AAA distanced itself from schizophrenia’s stronger connection to the category of mental illness and instead attached itself to the new and separate field of “autism and autism-like conditions” (Autism- och Aspergerförbundet, 2013, p. 17).

The later name change, in 2010, to Autism- och Aspergerförbundet (The Autism and Asperger Association) was presented in FFF without any commentary (Autism- och Aspergerförbundet, 2013, p. 28). But it entailed an expansion of the association’s focus as Asperger[’s Syndrome] was added to the name. Whether autism associations should foreground autism or Asperger’s Syndrome has been a recurring point of discussion. Oftentimes broad conflict lines have been drawn between parents of children with high-support needs who strive to find and promote better diagnostic procedures and treatments, and adults with low-support-needs autism who argue that their autism is a neurological variation, not a disorder to be treated (Bagatell, 2010; Bertilsdotter Rosqvist et al., 2015; Raz et al., 2018; Silverman, 2011).

The tensions between different enactments of autism and foci for the AAA can be clearly illustrated by two sections in FFT that discussed participation and empowerment. One of the sections described the Empowerment Project, which the AAA ran from 2001 to 2004, and was written by the project leader Hanna Danmo, who herself had Asperger’s Syndrome. The project, Danmo stated, was to “give adults with autism and asperger [sic] more influence in the association” (Autism- och Aspergerförbundet, 2013, p. 25) and during the project’s four years the number of elected representatives with a diagnosis increased significantly. In the second section, Pia Johansson, the then vice-president of the AAA, explained that it was decided in 2008 that “the time was right for adult members with autism spectrum diagnosis to participate in activities . . . based on their own preferences, interests, and terms” (Autism- och Aspergerförbundet, 2013, p. 26). The vice-president was careful to note, however, that this did not mean that there was an unawareness:

that there in certain contexts, in certain districts, and at certain times may be felt that “parents of children with autism and intellectual disabilities” are accorded too much space while the opinion that “there is too much focus on adults with Asperger’s Syndrome” can simultaneously exist. (Autism- och Aspergerförbundet, 2013, p. 26)

Johansson nevertheless argued that the presence of “many different perspectives, needs, and terms” (Autism- och Aspergerförbundet, 2013, p. 26) was in fact a strength leading to a wide range of knowledges and experiences as well as a strong commitment to the association.

These sections enacted an autism with shifting definitions, vaguer boundaries, and more conflicting perspectives, rather than the quite solid, uniform autism discussed earlier. This is further exemplified by a summary in FFT of the conference “Autism – Diagnosis and Treatment, State of the Art,” held in Gothenburg, Sweden in 1989. The conference featured famous autism researchers such as Uta Frith, Lorna Wing, and Christopher Gillberg but also a representative from the AAA and resulted, according to FFT, in a joint position on “the view of autism as biologically based, with a fairly uniform symptomatology with a variety of biological causes” (Autism- och Aspergerförbundet, 2013, p. 16). The hope was, as FFT narrated it, to “reduce the even in clinical contexts conflicting information . . . that families often encountered” (Autism- och Aspergerförbundet, 2013, p. 16).

We can here identify two modes of syncretism that differ from the previously mentioned separation. Concerning the association’s name changes, there is a form of denial. Several of the publication’s sections addressed topics such as Sweden’s backwardness in the 1970s, when autism was still talked about as a type of childhood psychosis, and that autism, as a biological condition, had always been “there.” Yet there was little explication of the AAA’s name changes, despite their intersection with the loaded issues of autism’s relation to schizophrenia and of autism’s etiology and changing definitions. This complicated—and, for the association, potentially complicating—history was in this manner denied and substituted with a quite smooth transition from one form of association to the other.

In the case of the boundary between autism and Asperger’s Syndrome as well as the joint position on autism, we can discern a domestication of autism’s heterogeneity. While there could be tensions between those with Asperger’s Syndrome and parents of children with autism, FFT declared the diversity present in the AAA (and, to extrapolate, present in autism itself) to be a strength that led to a more diverse and inclusive association. Similarly, although the joint position formulated at the conference offered a rather nonspecific characterization of autism as having a fairly uniform symptomatology and a variety of biological causes, this was subsumed under a view of autism as a biologically based condition whose clearer definition would hopefully lead to less confusion for families seeking help. The “fuzziness” of autism (see Hollin, 2017), which here included an unclear etiology and complicated relation to Asperger’s syndrome as a standalone diagnosis, became tamed, not through scientific clarifications and explications, but through referring to organizational and practical considerations.

I have in this subsection considered three modes of syncretism—separation, denial, and domestication—that were discernable in sections of FFT discussing the AAA and its history, as well as autism. I now turn to examining how FFT enacted the relation between different kinds of knowledges and affects.

Entangled kinds of knowledge and affects

There were generally no boundaries enacted in FFT between scientific knowledge, experienced-based knowledge, and popular culture. They were all woven into FFT’s narrative of the AAA and its members, history, and role in Swedish society. For instance, the 1961 book De ensamma (The Lonely), written by Stensland Junker (1961), was presented as central for Gunilla Wigren Dahlin in founding the AAA in the 1970s.⁸ The book detailed Stensland Junker’s experiences of having two children with developmental disorders and her emotionally draining search for knowledge and help. Wigren Dahlin, whose child had received an autism diagnosis, had “read [the book] and wept” (as cited in Autism- och Aspergerförbundet, 2013, p. 7), after which she sought out professionals and experts as well as other parents. The episode highlights the enactment of quite porous boundaries between scientific knowledge about autism, popular-cultural portrayals, and the AAA as an organization. People, feelings, and knowledge moved rather smoothly between what could otherwise easily be seen as distinct contexts. Similar stories appeared in other parts of FFT, as well. One section described when, in 1977, the AAA organized a special viewing for professionals of the play Ballerina, which was about “a girl with autism and her thoughts” (Autism- och Aspergerförbundet, 2013, p. 9). Another recounted when the AAA bought the Norwegian movie Det kunde varit ditt barn, din bror, din syster (It Could Have Been Your Child, Your Brother, Your Sister) and showed it to local politicians, giving them “a basic understanding [of autism]” and swaying them to “allocate money to a treatment home” (p. 9).

Different cultural products—books, plays, and movies—were enacted in FFT as essential to the founding of the AAA, and its mission to promote (a certain kind of) knowledge about autism. A significant characteristic of the narratives presented in FFT was that there were no significant boundaries enacted between these categories. An autobiographical book could lead to a personal recognition of being in a similar situation, to an endeavor to form an association united by a common goal, to advocating a view of autism as a condition caused by biological factors.

We can discern similar enactments in FFT in relation to affects. It was not simply the act of reading a book describing familiar experiences that led Wigren Dahlin to establish the AAA. Emotions equally played a central role, as it was emphasized that Wigren Dahlin had wept while reading Stensland Junker’s (1961) book. Affects linking people, experiences, knowledges, and needs appeared repeatedly in FFT, especially the feeling of being understood and not having to explain or excuse oneself. The AAA member Leif Ekström described that in 1981, his and his wife’s child received an infantile autism diagnosis, and the couple decided to invite other parents of children with similar diagnoses to their home. Although they had some initial fears about the meeting, the worries were quickly dissolved and replaced by a sense of relief as it became clear that “no one had previously met other parents who also had an equally tricky child” (Autism- och Aspergerförbundet, 2013, p. 10). The group of parents organized a regional chapter of the AAA and set out to spread information about autism as “the public, civil servants and politicians knew nothing about [it]” (Autism- och Aspergerförbundet, 2013, p. 10). Another member described a picnic organized in 1993 by the AAA as “a tremendous experience” where they got to meet other families with “unusual children” (Autism- och Aspergerförbundet, 2013, p. 22). It was “a turning point” to see that they were not alone.

Historical and sociological studies show that affectivity has been central in constituting and shaping research on autism (Fitzgerald, 2017; Silverman, 2011). Knowledge, including scientific knowledge, is often productively entangled with affects, not opposed to them. However, this has historically not been the case with autism. Since parents were for a long time seen as the cause of their child’s autism, their opinions and feelings were often questioned (Eyal, 2010, pp. 11–12). That many parents diligently observed and kept comprehensive records of their child’s health and development was interpreted as evincing the very emotional aloofness that caused the child’s autistic behavior. But this changed following the abandonment of the psychogenic theory of autism. Subsequently, “hybrid forms of knowledge” (Singh, 2015, p. 74)—comprising parents’ experience-based knowledge of their child—have become instrumental in driving research on autism but also, as for instance Lo Bosco (2021) has shown, positioning and legitimizing mothers as experts on and advocates for their children. The entanglement of affects and knowledge is not restricted to the field of autism, as affects such as frustration, feelings of loss, and hope have been integral to, for example, the work of gynecological cancer patients’ groups to enact cancer as a public issue in need of resources and highlight certain pharmaceutical treatments as prioritized (Lindén, 2021).

The enactments in FFT of porous boundaries between scientific knowledge, experienced-based knowledge, popular culture, and affects were central to the framing of the AAA and its history, role in Swedish society, and view on autism. In FFT, we find enactments of organizational support alongside enactments of political outreach. Enactments of feelings of isolation but also of recognition and thankfulness, next to enactments of scientific and popular cultural knowledge. We can here talk about a syncretic collapse practice. This is not to be interpreted as a failure (although, as Law et al. [2014, p. 186] observe, it might be by “those committed to the will of purity”). There is simply no concern here to maintain strict boundaries or avoid fuzziness, overlaps, and ambiguity. If it works, it works.

In this subsection I have addressed how FFT enacted and related scientific knowledge versus experienced-based knowledge and popular culture, and feelings versus knowledge. I have shown that these were handled through the syncretic practices of collapsing.

Concluding discussion

I have argued that one productive analytical approach to engaging with the apparent heterogeneity, ambiguity, and complexity of autism is to draw on the concept of modes of syncretism (Law et al., 2014), originally denoting the combining of religious practices from differing traditions. To illustrate this, I analyzed För första gången förstod någon – Från föreningen för psykotiska barn till Autism- och Aspergerförbundet (Autism- och Aspergerförbundet, 2013), a booklet published in 2013 to commemorate the founding 40 years earlier of Autism- and Aspergerförbundet (AAA), a Swedish advocacy and support association. Employing modes of syncretism, I identified how FFT encompassed several syncretic practices: separation, denial, domestication, and collapse.

A separating syncretic practice was used to separate autism as a biological condition from theories on autism as caused by psychological factors such as having an emotionally cold and aloof mother. The former was framed in FFT as a scientific and progressive view whereas the latter was presented as outdated and ideological as well as cruel to parents of children with autism. FFT thus enacted distinct differences between the two and strongly emphasized the importance of keeping them apart. The AAA’s promotion of a biomedical understanding of autism as a disability caused by biological factors aligned it with autism associations from countries like France (Chamak, 2008) and the United States (Singh, 2015). But associations have also made different interpretations of what the biomedical category entails. Many American autism associations have argued for a biomedical etiology of autism but proposed different environmental biological causes such as adverse reactions to vaccinations, gastrointestinal disorders, or environmental toxins (Silverman, 2011), none of which were mentioned in FFT, which instead upheld a rather vague, broad biomedical etiology. We can thus say that while FFT separated biomedical autism from psychogenetic, it also separated biomedical autism from the environment, be it the maternal body or environmental risks and factors (see Decoteau & Daniel, 2020, pp. 464–469).

The syncretic practice of separating a biomedical autism from a psychogenetic one can be contrasted with FFT’s framing and presentation of the relation between “pure” autism, and Asperger’s Syndrome and heterogenous autism. A denying practice can be seen in the treatment in FFT of the AAA’s name changes. The association’s name at the time of its founding was The Association for Psychotic Children but this was changed in 1990 to The National Autism Association. In 2010, the association’s name changed once more, to The Autism and Asperger Association. The relation between designations such as childhood schizophrenia, infantile autism, autism, and Asperger’s Syndrome has historically been contested and varied (Evans, 2017; Eyal et al., 2010). Yet this complicated and fluctuating history, and its significance for the AAA, was not explicitly discussed in FFT. It was, accordingly, denied and substituted with a quite smooth transition from one form of association, and one label, to the other.

Furthermore, a domesticating practice was discernable when the heterogeneity of autism was discussed in FFT. The booklet did, as mentioned, only offer a broad definition of autism as a biologically rooted disability, and it was remarked that there could be a variety of biological causes with a fairly uniform symptomatology. This certain but not absolute coherence of autism’s biological basis was presented as important for making sure that families were not met by misconceptions. Some of FFT’s (Autism- och Aspergerförbundet, 2013) sections further discussed tensions in the AAA between focusing on parents of children with autism and on adults with autism. This is a recurring point of contention, often highlighted in studies of autism support and advocacy associations, and has even led to break-out associations solely dedicated to either parents of children with autism, or adults with autism. FFT presented a rather conflict-free version of the AAA’s history, despite acknowledging that there had been friction between parents and adults with autism. But FFT instead claimed that the diversity in the AAA’s membership strengthened the association. FFT consequently domesticated autism’s heterogeneity in the name of clinical manageability, diversity, and strengthening the association. This syncretic practice contrasts with that of autism associations studied by Bagatell (2010) and Raz et al. (2018) but also, importantly, of the AAA-spinoff magazine Empowerment (Bertilsdotter Rosqvist et al., 2015; see also Bertilsdotter Rosqvist, 2014; Bertilsdotter Rosqvist et al., 2013). In such instances, associations, primarily consisting of individuals with autism, have taken a more oppositional stance toward those promoting a view of autism as a disorder. We can, with this article’s analytical vocabulary, see this as a syncretic conflict strategy, where one side aims to overpower the other to remove tensions due to undesirable noncoherent practices. In FFT (Autism- och Aspergerförbundet, 2013), the AAA conversely enacted the potential tensions as strengthening the association, even if they were at times difficult to contain.

A collapsing syncretic practice was identifiable in relation to how FFT handled questions of scientific knowledge vis-à-vis experienced-based knowledge and popular culture, and feelings vis-à-vis knowledge. This practice entailed a lack of concern with maintaining strict boundaries or avoiding fuzziness and ambiguity. Rather, it represented a thoroughly pragmatic stance where it was most important to do that which worked, with no hierarchy between better and worse ways to spread (the right kind of) knowledge about autism. In this, the AAA mirrored international developments where parents of children with autism have increasingly been positioned as experts on their own child (Eyal, 2010) and where their own expertise in providing care and love to their child has been central to parents’ efforts to legitimize themselves in the public and the scientific spheres (Lo Bosco, 2021; Silverman, 2011).

Developments in the fields of autism research—including medicine, the social sciences, and the humanities—have lately continued apace. Psychiatrists have emphasized the need for new models and theories that are holistic and open to temporal and dynamic changes in etiology, behaviors, and support needs, rather than focusing on stable, rigid descriptions and diagnoses (Fernell & Gillberg, 2023). New fields have appeared such as Critical Autism Studies (Milton & Ryan, 2022) and Neurodiversity Studies (Bertilsdotter Rosqvist et al., 2020), bringing with them novel ways to understand, theorize, and talk about autism, as well as creating spaces for neurodivergent perspectives and knowledge production. This is not to say that these developments are in lockstep with each other; quite the opposite, as they disagree on fundamental ontological, epistemological, and ethical questions. This ties into my analysis, as I do not see FFT as representing the “final truth” on autism, or the place accorded in the AAA to adults with autism. For instance, judging by previous studies on autistic self-advocates within the AAA (e.g., Bertilsdotter Rosqvist et al., 2015), it is conceivable that at least some adult members with autism would object to FFT’s historical narrative, including its domesticating strategy of acknowledging some dissent while framing it as fundamentally in line with the association’s general goals and interests.

Modes of syncretism cannot help us to decide whether this is a good strategy or not. They can, however, help make visible the syncretic practices used in a particular context and their consequences for how it is possible to understand and relate to the topic at hand. Which aspects are foregrounded, valued, acknowledged, and which are silenced, ignored, deprioritized, hidden? Moreover, much, up to and including the aforementioned recent scholarly and social developments, does suggest that the last chapter in the history of autism’s heterogeneity and ambivalence is not yet written, and maybe will not be for quite some time, if ever. Moving forward, modes of syncretism can be important precisely for discerning, understanding, and comparing how parents, professionals, experts, researchers, and adults with autism, and others, enact and relate to autism in all its syncretic complexity, and what this means for all of those whose lives have, in varying ways, been entangled with autism.

Autism is, moreover, just one of many “evasive,” “fuzzy,” and ambiguous phenomena in the history of psychology. Among these we can find, inter alia, neurosis (Pietikäinen, 2007), schizophrenia (McNally, 2012), and psychopathy (Eghigian, 2015). Here, too, can modes of syncretism be a fruitful addition to the analytical toolbox of historians, sociologists, and philosophers of psychology.

Footnotes

Funding

The author received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Peter Holmqvist

Notes

Author biography

Peter Holmqvist is a senior lecturer in Social Work at Linköping University, Sweden. His research interests include the history of psychology and psychiatry, child studies, media studies, and Science and Technology Studies. He is currently working on a project on the history of autism in Sweden during the late 20th and early 21st centuries. Among his latest publications are Child Studies Multiple: Collaborative Play for Thinking Through Theories and Methods and his dissertation, The Public Ill-Health: An Historical Study of Child Psychology and Psychiatry in Swedish Media 1968–2008.

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