HISTORY OF A FRAMEWORK AND THE FRAMEWORK OF A STORY AUTISM NARRATIVES

ABSTRACT

With the growing public interest in autism, we witness a critical twist in the debate that characterizes this subject. Initially reduced to the scientific field - generally medical - the issue of autism has been progressively taken over by different agents, especially by the autistic themselves, whose contributions have greatly expanded on what we may know about autism nowadays. With the term autism narratives, this article aims to demonstrate the richness of these new knowledge contributions to the scientific and political debate on the issue and demonstrate its risk of remaining encapsulated and restricted to the strictly scientific field. For this purpose, we go through the history of the concept, highlighting how it has been affected the scientific course enriched by these other agents' influence and the value of considering the various narratives about autism. Situating the diversity of these narratives is not only to retake a plural and open position against an exclusive and restrictive one but, instead, to put into action what may happen to the scientific debate when it does not close itself too much over the organization's objective tendency of scientific discourse.

Keywords:
Narratives;autismo; subjectivity

RESUMO.

Com o crescente interesse público pela questão do autismo, assistimos a uma torção importante do debate que caracteriza esse tema. Inicialmente reduzida ao campo científico - em geral médico - a questão do autismo se viu progressivamente encampada por diferentes agentes, sobretudo pelos próprios autistas, cujas contribuições ampliaram muito o que podemos saber hoje sobre o autismo. Com o termo narrativas do autismo, tivemos como proposta neste artigo demonstrar a riqueza dos aportes desses novos saberes para o debate científico e político sobre a questão, bem como demonstrar o risco dela permanecer encapsulada e restrita ao campo estritamente científico. Para tanto, passamos pela história do conceito ressaltando como nela se pode ver o quanto o percurso científico vai sendo afetado, enriquecido por influência desses outros agentes e o valor de se tomar em consideração as diversas narrativas sobre o autismo. Situar a diversidade dessas narrativas não tem como objetivo apenas retomar uma posição plural e aberta contra outra exclusiva e restritiva, mas, antes, de colocar em curso o que pode acontecer ao debate científico quando ele não se fecha demasiadamente sobre a tendência objetivante própria a organização do discurso científico.

Palavras-chave:
Narrativas; autismo; subjetividade

RESUMEN

Con el creciente interés público por la cuestión del autismo, asistimos a una torcedura importante del debate que caracteriza ese tema. Al principio reducida al campo científico - engeneral médico - lacuestión del autismo se vio progresivamente encampada por distintos agentes, sobre todo por los propios autistas, cuyas contribuciones ampliaron mucho lo que podemos saber hoy sobre el autismo. Con el término narrativas del autismo buscamos en este artículo demostrar la riqueza de los aportes de estos nuevos saberes para el debate científico y político sobre la cuestión, así como demostrar su riesgo de permanecer encapsulada y restringida al campo estrictamente científico. Para ello, pasamos por la historia del concepto resaltando cómo en ella se puede ver cuánto el curso científico va siendo afectado, enriquecido por influencia de esos otros agentes y el valor de tomar en consideración las diversas narrativas sobre el autismo. Situar la diversidad de estas narrativas no tiene como objetivo sólo retomar una posición plural y abierta contra otra exclusiva y restrictiva, sino más bien de poner en marcha lo que puede suceder al debate científico cuando no se cierra demasiado sobre la tendencia objetiva propia de la organización del discurso científico.

Palabrasclave:
Narrativas; autismo; subjetividad

Introduction

What is the truth about autism? An ambitious question that, despite the dangers it hides and the vices in which it participates, has won wide repercussion in our current society, being attractive to media, public authorities, the various involved professionals, but more broadly the society as a whole, even those who are not directly affected by the problem.

Everything happens as if the decoding of the framework, or even its circumscription - which continues to be a controversial problem -would provide a broader answer, with more significant consequences, than those with direct repercussions on autistic people and their surroundings.

Because it has become a ‘popular topic’, we can easily find the most diverse answers to the question. A variation that scientific discourse disdains, whether for an epistemic reason: its own constitution, opposite to doxa (opinion) and favorable to the epistéme; either for a socio-political reason: because in our contemporary world it has become a habit for scientific discourse to grant itself the right to the last word.

However, the insistent presence of other versions, despite the one exposed/imposed by the scientific discourse as true, reminds us of an old lesson, still consistent but already entirely forgotten, that scientific knowledge is not the only way of knowing in a society, not even its highest form at the expense of others considered more primitive and irrational.

Moreover, it will never be too much to remember the countless warnings made historically about the risks of taking this epistemically balanced knowledge as a reference for governing. Since the Platonic deception of taking philosophers, for their access to the truth, as those who should rule, through the enlightened society of Nazism that made scientific truth one of its pillars of legitimizing the decimation of thousands of Jews, reaching our contemporary society in which scientific knowledge is continuously caught in its partnership with financial interests that not only finance it but also condition it.

Both sides of the issue deserve to be considered: (1) the doxa's insistence; (2) granting science the dimension of truth.

Lyotard (1989), in his book The Postmodern Condition, had as an analysis object the transformations of scientific knowledge's nature in the contemporary world, resulting from the impact of technologies on knowledge.

According to this author, the computerized society's progress demanded, among other things, a transformation of knowledge and its circulation. The specific characteristic of scientific knowledge of externalizing itself concerning the subject who knows, taking on desubjectivised forms, was enhanced by information technology's logic that reduces knowledge to information. Knowledge could and should be constructed in the form of formal, universal statements, capable of replication within a system that reifies it, hiding its conflicting and historically constructed origin. Every dimension of enunciation present in knowledge and everything that, even being in the order of knowledge, cannot be translated into computer language must be left out.

Nevertheless, says Lyotard (1989), scientific knowledge cannot wholly abstain from the enunciation dimension. Whether it formulates the scientific problem either it communicates its findings to the broader community, the scientist is forced to pass through the doxa and common language paths, outside of which he risks himself not being understood.

In other words, the scientist - particularly the contemporary - is mistaken when he believes he can dream of carrying out all his work in a technical language, as he needs to be inserted in the social bond to assert what he formulates.

Even this assertion of transforming scientific discoveries into information that starts to convey the truth with certainty value and commercial market value should shock the scientist who will have learned in his training - with Popper (1995) particularly - that real science rests on falsification, not verification. In other words, the truth in science is always provisional and that any transformation of that provisionality into absolute certainty is an imposture that plays against science.

Despite this, we note little resistance from scientists' universe to the media approach and the reified use that public authorities make of scientific knowledge for purposes adequate to the commodity's logic. In effect, it is not convenient for a commodity to have the doubt constituting its value; it should be unchallenged.

It will be with Lyotard (1989) again that we will see an essential and illuminating distinction arise concerning the question of knowledge. According to him, knowledge is a broader operation than the epistemic solution - which is but one of its resources - can support.

Knowledge includes, in addition to the denotative statements, proper to the epistemic dimension, know-how, know-live, among others. It exceeds the single criterion of truth; it participates in other dimensions such as the just, the efficient, the beautiful, the seductive, et so on. To take scientific truth as a criterion for governing is to deny that governing is involved in all these other constants forms of knowledge.

In psychoanalysis, Freud discovered the ineffectiveness of the scientific truth about knowledge early. There is no point in communicating to the patient the content of his interpretive discovery. The curative power is not the clarification arising from this communication, but, rather, the reverberation that it can have in the patient's associative chains. In other words, despite the crazy belief of the contemporary scientist, it is necessary to consider all the own dynamics to the knowledge that remains totally tied to the subject's decisions. Knowledge cannot be wholly externalized, and even that part where some externalization is possible remains conditioned in its effects by the one who receives the information.

A more apparent distinction in the French than in the Portuguese language clarifies this point: sachant, the subject who knows, is different from savant, who is the one who Knows. The first has the knowledge that governs him, the second - expressed in the expert's figure-has the knowledge to govern.

Still, under Lyotard's (1989) formulations, we see that historically scientific knowledge has sought to assert itself in opposition to narrative knowledge. It is an opposition that is based on a wrong and even impossible principle.

Narrative and scientific knowledge are different, but not excluding, unless, of course, one wants to establish a competition between them that would have no value, except for marketing purposes.

The pragmatic narrative consists of a plurality of language games -denotative, deontic, interrogative, evaluative, among others. Its main intention is to transmit knowledge that forms a social bond, and the report represents its most common form. For example, despite their eventual inaccuracy, popular stories have the power to cultivate habits, reinforce or question social institutions, and allow criteria of competence according to which the authors are judged.

As such, narrative knowledge does not need to bring into question the conditions for its legitimation. Legitimation takes place in the capacity that this knowledge has to make and enhance the social bond.

Scientific knowledge, in turn, is the one that poses the question of its legitimation. Refusing the various language games, scientific knowledge builds its notoriety by reducing itself to the denotative game. The scientist is the one who takes care of how it is and to focus on that; he can not give in to judgments, either aesthetic or moral of the problem. He must be able to present the evidence and get around the refutations.

A terminological distinction that also lost strength in the Portuguese language but remains firm in English illustrates the distinction between scientific and narrative knowledge. The first would be closer to the idea of ​​History while the second, of story.

As we said above, the attempt to turn the whole story into history seems to have become an obsession with contemporary science. An impossible task since science cannot surpass Bildung, a principle according to which all knowledge acquisition is inseparable from the spirit's formation.

Science deteriorates as a mere government of men when it forgets about Bildungand stumbles in its pretension to make the head of the people because the head of the people has its tricks to continue carrying its word.

If we propose the term autism narratives as a twofold title it is due to: (1) underline that the plurality of narrative positions on autism - from psychiatrists, psychoanalysts, parents, teachers, journalists, et so on. - constitutes a wealth not to be neglected in favor of a unique position, said to be true; (2) revalue the idea of ​​narrative as a procedure that returns the subject to a scene from which he was removed from the scientific claim of objectivity. The question of truth is not limited to the scientific approach, and the presence of the countless narratives about autism has proved it. All of which demand their public recognition.

Within psychoanalysis, it was with Lacan (1998) that we saw this question of truth won its proper dimension. The difference between the true - scientific postulate of deduction conditioned by logical premises - and the truth - which has a structure of fiction while it is conditioned by the games of the subject's dynamics- is crucial to understand the value of narratives. It was not random that in order to arrive at truth with effects on the subject, Freud found himself guided by a work strategy that suspended the true - universal of science - in favor of a singular truth, built in the interstices of fiction forged in a meaningful experience of the subject with his peers.

The various narratives of autism that we will seek to present speak about the history of the concept - because, in any case, this concept has its history - and the stories traced in the significant chains of the various subjects who see themselves as their effects.

We can expect from such a path clarifications about autism, not so much about its syndromic configuration, or, to use its more modern name, spectral, but, instead, a relaunch of the autism issue as a significant that forms a social bond and circulates in more varied knowledge that inhabits polis.

If psychiatrists, imbued with their classificatory eagerness, found themselves dealing with recognizing a plurality in the autistic situation, a consideration that led them to assume this plurality at the diagnostic level - disorders and spectrum are two words that address the idea of ​​plural - we see ourselves, on our part, able to propose another image of plurality, through the ‘narrative’ term. From a plurality, now, not intrinsic to the framework, intrinsic to the effects that this signifiant's circulation has on the social bond.

In another sense, as we find it in dictionaries, let us also remember that spectrum refers to an image that is considered ghostly, incorporeal, of someone who is not alive, a ghost. It can also refer to what causes fear, a threat, which causes pain and suffering.

It is curious that a speech so accustomed to denotative terms, such as scientific, chooses such a connotative word to name and describe a nosographic framework. Perhaps this testifies to a certain embarrassment still found in defining a framework that brings together subjects so diverse in their constitution that they are hardly ready to be brought together in the same and only framework. Is it a ghost concept?

Autism and its history

Scientific knowledge about autism is based on the invention of the diagnostic framework of autism by the psychiatric father of this terminology: Kanner. The autism concept's history imbues the diagnostic description and categorization as a compilation of behaviors and characteristics that delimit a specific framework, distinct from those that existed until then. The psychopathological diagnosis of autism is based on the descriptions and diagnostic formulations of Kanner (1943/2012) about children who manifested since their early childhood an “[…] extreme desire for loneliness and the absence of change” (p. 168). In characterizing the so-called case 1, Kanner described a five-year-old child (Donald T.) who was “[…] extremely autistic […]” (p. 120). However, “[…] this constellation of behaviors […] had no name […]” (Donvan& Zucker, 2017, p. 20) until Leo Kanner described and characterized them as a psychopathological framework. Thus, with the scientific publication of this clinical material, Donald, like the other children described by Kanner, became part of the official storyline of the history of autism as a psychopathological framework of autistic disorder of affective contact.

Kanner had become the most renowned child psychiatrist in the country when the Triplett family requested an assessment for his son in 1938. Before meeting Donald for the first time, Kanner asks his parents to narrate his story, writing a letter with a detailed history. So Kanner - “[…] the doctor who liked histories […]” (Donvan& Zucker, 2017, p. 43) read the letter from Donald's father, Beanon, addressed to Kanner, with an enormous amount of detailed descriptions of the story of that suffering. Then, in the history of autism, the father's report emerges, describing “[…] little by little that which would become the seminal description of a child with autism, word and diagnosis that does not yet exist […]” (p. 44), from the portraited Donald by his father in a letter addressed to Kanner who will become the psychiatric nosography father of autism.

Weeks of observation of Donald passed by Kanner and his medical team, after which Kanner did not provide a diagnosis, stating that Donald was different from all the frameworks that had already been determined. He asked the parents to provide information about Donald's development after returning to family life, affirming the favorable impression he had of Donald's mother, as the only person with whom he had contact, highlighting in his medical report her active position in calling the son to interact and play with her.

In exchanging letters with Kanner, Donald's mother, Mary, finds an interlocutor to direct her suffering narrative. In him, she finds an expert who recognizes her dedication and effort, sharing with her the enigma of those behaviors. In several letters, Kanner proves to be a reassuring partner, who listens to what she has to say, designating as “[…] heroic […]” (Donvan& Zucker, 2017, p. 49) her effort to help his son, and opening up the possibility of an improvement. In several letters exchanged, a welcoming and reassuring reading/listening posture prevailed on Kanner's part, stimulating, and recognizing a lack of knowledge about the diagnosis, the coming, the prognosis and the explanation for Donald's behaviors and other manifestations.

Then, in a letter addressed to Mary, dated 1942, he states “[…] to recognize for the first time a disorder that, until now, has not been described by psychiatric literature or by any other […]” (Donvan& Zucker, 2017, p. 50), reiterating having met other children with similar problems, in such a way that “[…] if there is a name to be applied to the problem of Don and the other children […]” (p. 50), it could be called “[…] autistic disorder of affective contact […]” (p. 50), terminology⁴ that would be maintained in the subsequent scientific publication: “The autistic disorder of affective contact” (Kanner, 2012, p. 111) which characterizes the official psychiatric origin of the psychopathological condition.

Through the carbon copies of these letters exchanged between Mary and Kanner, we show how the naming of the autism psychopathological framework is anchored in the addressing of this expert to a mother, suggesting the possibility of an innate disorder that prevented these children with others.

Contrary to the later narrative of the indictment, which will be remarkable in the specialists´ discourse, including Kanner himself, in this first moment, it is in the partnership between parents, especially Donald's mother, and the most outstanding child psychiatry specialist at the time that this diagnosis appears, overlapping the manifestations thoroughly described by parents and the explanations put forward by Kanner. However, the question of what would cause autism remained. Then, covered by a historical context full of psychoanalytic formulations that focused on the source of malaise in maternal failures, the narrative of blaming parents, but especially mothers, emerges as responsible for their children's autism. This was one of the autism plots that had profound marks not only in this generation but that reactively and subsequently impacted several manifestations of parents resentful for being considered causes of autism for having done something wrong, as being cold or not loving enough or in the proper way.

This narrative, “[…] what the experts said, when autism occurred, it was always the mother's blame” (Donvan& Zucker, 2017, p. 91) prevailed, being a paradigmatic a 1948 report from Time magazine that describes autistic children as “[…] schizoidin diapers […]” (p. 91) who are “[…]overjoyed when they were alone […]” (p. 91), referred to “[…] cold parents […]” (p. 91), citing that these children “[…] were simply kept in a refrigerator that did not thaw […]” (p. 91). Designations about the refrigerator mother causing autism have become frequent, referring to the etiology of autism to a discussion about maternal blame. The authors emphasize that although the psychoanalyst Bettelheim's narrative about autism was the main stimulator of this discursive strand of mothers blaming, based on a conception of the autistic child experiencing the world as too much threatening, the refrigerator mother terminology as a metaphor for Kanner´s mother was created by Kanner himself, describing defective characteristics in mothers of autistic people, including some descriptions of situations experienced with the Tripplet family, whom he had so often described his admiration. However, now they were focused on from the perspective of a possible parental rejection: “[…] coldness […]” (p. 100) “[…] lack of genuine maternal affection […]” (p. 100), among other characteristics in this aspect of “[…] unable to love their children as they are […]” (p. 101)

Nevertheless, a note made by journalists Donvan and Zucker deserves to be highlighted to elucidate the repercussion of this declaration of autism attribution to the refrigerator mothers. Autism only drew the general public's attention from the moment that a relationship between autism and maternal coldness was narrated. Until then, journalists point out that the diagnosis of autism was restricted mainly to the cases that Kanner and his team diagnosed. His scientific articles had received little attention, and there was no particular interest in the media for his discovery of the psychopathology that affected so few children and that other doctors did not describe finding in his clinics. Only after the kannerian formulation of refrigerator mothers in autism became this disorder a more frequent diagnosis (or we can even say in fashion), reflecting an accusatory movement from others, which became a self-accusatory movement of fragile mothers who were looking for what they had done that had caused it, making the mothers blaming in the narrative about autism worldwide.

For a long time, a blaming reading of the parents remained in the treatment and approach of the autistic. Based on several interviews and documents of the time, Donvan and Zucker (2017) report examples of several mothers of autistic people who, in order to be entitled to the institutional treatment of autism, should corroborate with the psychogenic origin of autism related to pathological mothers who had produced an emotional trauma in their children. In this approach, mothers extremely dedicated to their children, instead of being recognized for their effort, dedication, love, were easily interpreted by the sieve of the refrigerator mothers. When it turned out that they were extremely dedicated mothers with their children, it could easily be interpreted that this dedication was a blame reaction because of the previous lousy motherhood that had caused the disorder.

Autists were treated in institutions that narratively formulated that they were providing “[...] therapeutic maternity [...]” (Donvan& Zucker, 2017, p. 113) as a substitute for the deficient and pathological offered by the family of origin, and mothers should be excluded from the treatment of their children so that they could havea recovery. In this mother-refrigerator narrative, “[...] the mother's indictment was the starting point [...]” (p. 110). However, it is progressively in the institutions of treatment of autistic children - which are no longer institutionalized and removed from the family - that many mothers begin to interact with other mothers, and a horizontal movement of mutual support gradually appears.

Parents of autistic children start to emerge to oppose the indictment narrative. Ruth Sullivan, a mother of seven children and who had only one with autism, was an emblematic example. She dedicates herself to studying hard all scientific publications on autism. She progressively becomes the representative of a group of women who begin to question the narrative of autism indictment for mothers' failures. A new narrative of autism appears in the media: parents are heroes who struggle daily to make room for children so different from other children.

Gradually, the way of narrating autism comes close to how activist parents narrated their disabled children. Nevertheless, the mark of parents' accusation for their children's autism still prevailed, contrary to what happened, for example, in the case of physical disability. With the increase in the number of diagnosed autism cases, speeches by specialists who were also parents of autistic people, such as Bernard Rimland, appeared. He represents another emblematic aspect of parents with degrees in psychology, psychiatry or neurology, who, after their son's diagnosis, dedicate themselves to researching the theme, questioning the autism narrative as being caused by parents

Rimland analyzes the studies on refrigerator mothers, questioning what he judged to be the low scientificity of all the published material. Daily, he saw his wife's interaction with her son as evidence that the mothers' blaming narrative should be put in check, stating that it is “[…] plausible that such behaviors, taken as proof of ‘coldness’, resulted from exhaustion and confusion, due to the son's apparent indifference to the mother's words and loving contacts” (Donvan& Zucker, 2017, p. 127, authors emphasis). Rimland prioritizes a new conception of autism related to an etiology linked to organic causes, which unfolds in the formulation of an etiology and treatment related to nutritional issues, implying diet changes. At that time, etiology and treatment formulations on a vaccination theory linked to the origin of autism also coexisted. Silberman (2016), for example, analyzed documents that demonstrate that, with the increase in the diagnosis of autistic patients, there were rumors of stories about children who, after being vaccinated, became autistic, and how this turned into a new autism narrative. The journalist points out that other parents of autistic children pressured parents not to vaccinate their children and follow dietary changes, pointing to the effects of the various clashes among the different discourses on autism etiologies and treatments. Eyal, Hart, Onculer, Oren and Rossi (2010) suggest that this alternative theory is situated in various alternative medicines from different approaches to autism. Most of the parents mixed these various treatments offered - official and unofficial. There is an appropriation of scientific knowledge, which is being modified and transmitted by parents who report their life stories to other parents of autistic children⁵.

Supported by an expert - Rimland - who questioned the scientific production on the subject, more and more autistic parents dedicated themselves to study autism and felt validated by Rimland to question how the autistic was theorized and treated. ‘Mailing lists’ also appeared, integrating the various discoveries and information from parents, besides autobiographical reports, and books. The growing strength of parents organizing themselves around the identity of autistic people ‘parents’, which, as we have pointed out, is covered by a heroic narrative, underpins a new treatment network, more horizontal concerning professionals’ expertise. In this context, Eyal et al. (2010, p. 172) highlight the emergence of a “[...] counter-narrative [...]” to the previous ones based on the professional expertise of the specialists. More than a search for external (official) validation, an ‘insider’horizontal spread emerged within parents’ groups of autistic children.

When the Lovaas Model, an Applied Behavior Analysis (ABA) used in early intervention programs for autistic people, was significantly empowered, Silberman (2016) highlights the impact of autobiographies of autistic parents describing the effects obtained with the behavioral changes effected through this method of behavioral change, highlighting that the perspective of an improvement hope impacted a generation that had been impregnated by a previous narrative of incurability, lack of favorable prognosis and indictment.

Analyzing how autism was portrayed in the media, Donvan and Zucker (2017) stress how the story that life with autism was a nightmare increasingly emerges, making homes a hell, referred to the importance of useful methods, focusing on ABA for behavior modification. Journalists highlight a report from the Life magazine (1965) describing the progressive emphasis on this new way of narrating autism. Even more famous is an edition of the New York Times newspaper (1987), in which a 47% success rate of the Lovaas method is disclosed in the behavior modification that transformed children diagnosed with autism into apparently normal children.

From the new place assigned to treatments and a new narrative of parents fighting for their children's betterment, a ‘lobbying’ exercise began initially in the USA. The internet spread it quickly on a worldwide scale, requiring treatment and education appropriate to autistic. Many parents legally demanded their children's right to receive an intervention following ABA, placing autism in the legal sphere, driven by the propagated rate of 47%, which generated a nickname of ‘Lovaas cases’ to designate this new autism narrative.

This new narrative of autistic people drives parents, who use this rate as “[…] a mantra of their own that appeared in online forums, in speeches at their conferences and pamphlets […]” (Donvan& Zucker, 2017, p. 262), which stated that “ABA is the only treatment with a scientific basis, medical support and proven effectiveness” (p. 262). In this context, we can corroborate with the statement that ABA has become “[…] at the same time therapy and parental movement […]” (p. 262) in autism. Autistic parents mobilized in parents’ associations created in the name of the autistic children defense, especially those with low functioning, often led to an “[…] aggressive parental activism […]” (p. 273), while the ABA demand increased in public health . At that time, movements emerged globally around this autism narrative.

In the political scenario, through the parents ‘lobbying’ on behalf of the autistic and funded by horizontal ‘crowdfunding’modalities, the new narrative of a possible cure for autism is interwoven with the preventive speech and detection of defective genetics or the biomedical cause of the disorder source. There is a distinction, highlighted by Runswick (2016), Runswick, Mallet and Timimi (2016), between this biomedical model of autism as a disability, a cognitive disorder related to a biomedical disability, of a contemporary approach to autism as a different way of the brain to connect itself; different, not worse or deficient. We will cover in the text the question of neurodiversity in the recent history of autism.

Based on scientific knowledge, a new narrative emerges on the deficit side, dedicated to thinking about cognitive issues in autism, under a deficit perspective. However, the perspective that autism would be a short version of what normality would be, which supported a scientific autism narrative and appropriated in various autism policies as a disability, began to encounter opposition originally from people diagnosed with autism.

Concomitantly, in ​​scientific knowledge, researchers from different theoretical lines, such as the cognitivist Mottron (2004) and the psychoanalyst Maleval (2017), have been dedicated to analyzing the autobiographical material written by autists. We have detected a new trend of revisiting scientific theorizations, which recognizes that autobiographies of autistic people express their “[...] subjective truth” (Mottron, 2004, p. 174). A singular subjectivity is emphasized, avoiding negative or defective attribution to otherness, to the different, in a logic that is not domination, but a logic of respect and acceptance of otherness, in this case, in a different way of psychic functioning. Would this subjective truth be less trustworthy than that from objective science?

Mottron (2004), whose study area is focused on human cognition, points out a tendency for researchers to adopt ‘normocentric’ interpretation, understanding as deficient what could be analyzed as a different way of psychic functioning, emphasizing the importance of respect for difference, without the normality filter as an ideal parameter. In this sense, Mottron is emphatic in stressing the importance of autobiographical reports by autists for the understanding of the logic of autism, with a worldwide emphasis mainly on the work of the autistic Temple Grandin (Grandin &Scariano, 2014).

The prospect that an autistic person can have something to say about herself, about her treatment, about the world, has spilled over scientific boundaries. The inclusion of autistic people in public debates about autism has been encouraged by the internet, disseminating films and blogs produced by autistic people. However, tension with this change is still dominant. Regardless, the autistic person seems to want his truth to be recognized as a subjective position, contrary to science plans that want to objectify his truth as a disability.

Contrary to the emergence of a plurality of voices, in the official Brazilian (printed) media, a single form of representation of the autistic person is privileged. Ortega, Zorzanelli and Rios (2016, p. 67) reinforce how much autism is a nosographic category of psychiatry that is delimited by a “[…] public negotiation of medical and non-medical factors […]”, affirming the impact of media narratives in the construction of the autism representation in Brazil. In recent years, they characterize the increase in printed texts aimed at the general public, with autism thematic, detecting that several of these described scientific studies, especially those of neuroscience, highlighting autism as a brain disorder from the genetic origin. They observed that 75.5% of the studies were translations of foreign research or were published in Brazil, but without referring to Brazilian specificity, but internationally, and only 18.6% of the studies focused on Brazilian specificity. Besides, the researchers point out that although these texts were addressed to the general public and were focused on disseminating these foreign researches, they had been precipitated by some issue arising from a problem involving politics or the provision of public service to an autistic person. In this context, usually, the journalistic plot was that of an autistic person who was not receiving the education or health that should be guaranteed by Brazilian legislation, culminating in the “[...] narrative of insufficiency [...]” (p. 79), which reinforced “[...] the perception that there is no service for the person [...]” (p. 79). It is pointed out that there is such an emphasis on service failure, focusing on autistic people as those without any treatment and forgotten by the State, that rarely focuses on existing services and what is already offered in public care for autistic people. The researchers point out that this failure is in opposition to the urgent need for these autists to receive the treatment they need. Not only is an insufficiency of services highlighted, but also of specialists who work and research in Brazil, mainly in the public sphere.

It privileges a unique view of autism represented as a neurological disorder, which would have a single practical approach, from which autists and parents would be deprived by the Government's failure to guarantee their rights as a citizen, and by the incompetence of Brazilian professionals and researchers, lagged from efficient international research and practice, culminating in the increase of tensions that resulted in the current “Wars of Autism in Brazil” (Ortega, Zorzanelli, & Rios, 2016, p. 68), involving everyone related to this area.

Final considerations

Contrary to the idea of ​​autism as a thing existing in itself, we point out how these various narratives are different forms of intertwined knowledge. The path taken by the article sought to elucidate some of the tension movements that exist today, but that portrays a history of different ways of narrating autism, which impacted the different modalities of treatment and education offered to autistic people. In these various narratives about autists, we embrace different ways of dealing with difference and living with the other, in their otherness, and the tension of the foreigner’s naming’s effects as attempts to better welcome or normalize them.

Currently, autism naming has become the “[…] master significant of childhood psychopathology” (Thomas, 2011, p. 11). Researcher Thomas highlights Kanner’s discursive founding effect. His act of diagnosis, of naming, produced the psychopathological entity that today is supported worldwide. What the psychoanalyst names in terms of the fabrication of autism, we seek to focus on opposing plural narratives. In a scenario in which political and economic forces increasingly come into play to validate scientific knowledge approaches, highlighting knowledge from this other (unofficial) knowledge is a path to problematize the idea of ​​autism, of treatment, of an approach. Our emphasis on narratives, in the plural, partly aligns with Thomas perspective, who seeks to point out how much autism is not a natural fact, but produced, an effect of naming.

We seek to bring contributions to the elucidation of what is called the autism epidemic⁶. Our choice for the term narratives aimed to oppose the predominant scientific monism that seeks to establish for itself the unique right of discourse on autism. Evidently, it fails, and our emphasis on plural narratives, intermingling histories and stories, shows this well.

Besides, speaking in narratives highlights the importance of naming and discursivity in constructing the process. In contrast to the emphasis on spectrum terminology, we try to highlight another plural term: narratives, to show the prismatic range of speeches on the subject. In this sense, highlighting the term narrative, from this perspective, is politically essential to think about the way to conceive autism and to educate and treat the so-called autistic.

Referências

• Donvan, J., & Zucker, C. (2017). Outra sintonia: a história do autismo (L. A. de Araújo, trad.). São Paulo, SP: Companhia das Letras.
• Eyal, G., Hart, B., Onculer, E., Oren, N., & Rossi, N. (2010). The autism matrix: the social origins of the autism epidemic Cambridge, UK: Polity Press.
• Grandin, T., &Scariano, M. M. (2014). Uma menina estranha: autobiografia de uma autista São Paulo, SP: EditoraSchwarcz.
• Hassal, R. (2016). Does everybody with an autism diagnosis have the same underlying condition? In K. Runswick-Cole, R. Mallet & S. Timimi(Orgs.), Re-thinking autism: diagnosis, identity and equality(p. 49-66). London, UK: Jessica Kingsley Publishers.
• Kanner, L. (2012). Os distúrbios autísticos do contato afetivo. In P. S. Rocha(Org.), Autismos (p. 111-170). São Paulo, SP: Escuta. Texto original publicado em 1943.
• Lacan, J. (1998). A ciência e a verdade. In J. Lacan. Escritos (p. 869-892). Rio de Janeiro, RJ: JZE.
• Lyotard, J-F. (1989). A condição pós-moderna Lisboa, PT: Gradiva.
• Maleval, J-C. (2017). O autista e a sua voz(P. S. de Souza Jr, trad.). São Paulo, SP: Blucher.
• Mottron, L. (2004). L’autisme: une autreintelligence: diagnostic, cognition et supportdespersonnesautistessansdéficienceintelectuelle Bruxelles, BE: Mardaga.
• Ortega, F., Zorzanelli, R., & Rios, C. (2016). The biopolitics of autism in Brazil. In K. Runswick-Cole, R. Mallet & S. Timimi(Orgs.), Re-thinking autism: diagnosis, identity and equality (p. 67-89). London, UK: Jessica Kingsley Publishers .
• Popper, K. (1995). A lógica da pesquisa científica São Paulo, SP: Cultrix.
• Runswick, K. (2016). Understanding this thing called autism. In K. Runswick-Cole; R. Mallet & S. Timimi (Orgs.), Re-thinking autism: diagnosis, identity and equality (p. 19-29). London, UK: Jessica Kingsley Publishers .
• Runswick, K., Mallet, R., & Timimi, S. (2016). Introduction. In K. Runswick-Cole , R. Malllet& S. Timimi (Orgs.), Re-thinking autism: diagnosis, identity and equality (p. 7-15). London, UK: Jessica Kingsley Publishers .
• Silberman, S. (2016). Neurotribes: the legacy of autism and the future of neurodiversity New York, NY: Avery.
• Thomas, M-C. (2011). L’autisme et les langues Paris, FR: L’Harmattan.

• 4
  Appropriating the term of autism that had been used by the psychiatrist Bleuer to characterize in the clinic of adolescent and adult schizophrenics the manifestation of a withdrawal from the world and the relationship with others, Kanner introduces this term present in the psychiatric vocabulary to describe and characterize a disorder of affective contact present since early childhood.
• 5
  It is from the meeting of Sullivan and Rimland that the horizontal movement of parents’ connection of autistic children through associations, such as the National Society for Autistic Children (SNCA), created in 1965, arises.
• 6
  Autism has been described in different ways from one DSM edition (Diagnostic Manual) to another, which impacts both scientific publications and the social representation of autism. [xref ref-type="bibr" rid="r4"]Hassal (2016)[/xref] critically analyzes the tendency to assume that the last diagnostic classification is always the best, perfected because it is the result of scientific knowledge acquired in that period of time, signaling the tendency to disregard the “[…] discontinuities […]” (p. 52) from the manual in favor of a progressive straight reading, in addition to preconceiving that it is always a single condition described in that designation.

Publication Dates

• Publication in this collection
  16 Mar 2022
• Date of issue
  2022

History

• Received
  14 Dec 2018
• Accepted
  05 Aug 2019