THE BIOECOLOGY OF AUTISM: AN ANALYSIS OF REPORTS ON SOCIAL ISSUES THAT AFFECT THE DEVELOPMENT

ABSTRACT:

This article presents a literature review on reports about people with autism in research carried out in the areas of Education, Psychology, Medicine, and Nursing. We collected twenty-two articles in the SciELO database between 2008 and 2021, using the keywords autism and interviews. We analyzed the data using the Content Analysis technique (BARDIN, 2016) with the help of ATLAS.ti software. We discussed the categories raised, diagnosis and health; education; and family relationships from the theoretical-methodological perspectives of Vygotsky (2003) and Bronfenbrenner (1996). Such an analysis made it possible to relate personal and social issues based on the socio-historical and bioecological relationships that involve the lives of subjects with autism. The results show the interference between the insufficient supply of services and social support policies and these people's development; the importance of school and the inadequate teacher training; and the repercussions of this development in family routines, especially in the life of the mother figure.

Keywords:
autism; human development; socio-historical perspective; bioecological theory

RESUMO:

Este artigo apresenta uma revisão da literatura sobre relatos acerca de pessoas com autismo em pesquisas realizadas nos campos da Educação, Psicologia, Medicina e Enfermagem. Foram coletados 22 artigos na base de dados SciELO, entre os anos de 2008 e 2021, a partir das palavras-chave autismo e entrevistas. Os dados foram analisados pela técnica da Análise de Conteúdo (BARDIN, 2016), com o auxílio do software ATLAS.ti. As categorias levantadas - diagnóstico e saúde; educação; e relações familiares - foram discutidas a partir das perspectivas teórico-metodológicas de Vygotsky (2003) e Bronfenbrenner (1996). Tal análise permitiu relacionar as questões pessoais com as sociais, tomando por base as relações socio-históricas e bioecológicas que envolvem a vida dos sujeitos com autismo. Os resultados apontam para a interferência entre a insuficiência de oferta de serviços e políticas de suporte social e o desenvolvimento dessas pessoas; a importância da escola e a deficitária formação docente; e as repercussões desse desenvolvimento nas rotinas familiares, sobretudo na vida da figura materna.

Palavras-chave:
autismo; desenvolvimento humano; perspectiva socio-histórica; teoria bioecológica

RESUMEN:

Este artículo presenta una revisión de la literatura sobre los relatos acerca de las personas con autismo en las investigaciones realizadas en los campos de Educación, Psicología, Medicina y Enfermería. Se recogieron 22 artículos de la base de datos SciELO, entre 2008 y 2021, utilizando las palabras clave autismo y entrevistas. Los datos se analizaron mediante la técnica de Análisis de Contenido (BARDIN, 2016), con la ayuda del software ATLAS.ti. Las categorías planteadas, diagnóstico y salud; educación; y relaciones familiares, fueron discutidas desde las perspectivas teóricas y metodológicas de Vygotsky (2003) y Bronfenbrenner (1996). Este análisis permitió relacionar las cuestiones personales con las sociales, a partir de las relaciones socio-históricas y bioecológicas que envuelven la vida de los sujetos con autismo. Los resultados señalan la interferencia entre la insuficiente oferta de servicios y políticas de apoyo social y el desarrollo de estas personas; la importancia de la escuela y la deficiente formación docente; y las repercusiones de este desarrollo en las rutinas familiares, especialmente en la vida de la figura materna.

Palabras clave:
autismo; desarrollo humano; perspectiva socio-histórica; teoría bioecológica

INTRODUCTION

The debate about human development processes crosses different areas of knowledge and is present in many studies that seek to understand how we learn and transform ourselves. Such studies were definitely marked by the ideas of Lev Vygotsky (2003) and Urie Bronfenbrenner (1996), as they were able to mark the interrelation between development and the social context, highlighting that the human being is constituted in social relations, in social, economic, political, environmental, and cultural contexts. Thus, a procedural perspective is attached to human development (extending from birth to death), within culturally organized and socially regulated environments, through interactions established with partners, in which each one, regardless of age, plays an active role.

Vygotsky (2003) remains current, being a source of inspiration for countless research. The psychologist was the first to treat human development from social interaction and living conditions, which makes us understand that the brain modifies and develops from the relations with the environment and in the historical context in which it is inserted. The socio-historical-cultural perspective outlined in his research deals with human development in the phylogenetic, that is, from the study of the history of the human species, and ontogenetic, that is, from the study of the history of the human individual.

Bronfenbrenner (1996), in turn, in the late 1970s, when dealing with individual characteristics, based on naturalistic researches of observation of people in their real contexts, pointed out that "human development is defined as the phenomenon of continuity and change in the biopsychological characteristics of human beings, as individuals and as groups" (BRONFENBRENNER, 1996, p. 38), being "characterized by the commitment to understand the dynamics of the relationships between the individual and the diverse and integrated ecological levels" (BRONFENBRENNER, 1996, p. 19).

Therefore, it is possible to find convergent aspects in these perspectives, since both emphasize the fact that social relations are continuously co-constructed from interactions, that is, from shared and interdependent actions established among people (OLIVEIRA, 1988, 1996; OLIVEIRA; ROSSETTI-FERREIRA, 1993). It is worth highlighting, in the meantime, the place of conflict and contradiction as an integral and fundamental part of the process, since here it is admitted the existence of the confrontation of actions, emotions, motivations, and meanings of the different participants. Thus, development would occur in the midst of conflicts and crises, in which people and the networks of meanings that permeate the process are continuously and mutually transformed and restructured in these interactions.

Researching how these processes take place in people with disabilities, specifically those with autism spectrum disorder (ASD) - a global disorder that affects mainly cognition, communication/language, and social interaction - and seeking to understand how adaptations and development of this specific public happen, on the other hand, is not something so common, as we will show below. Perhaps this is due to the great heterogeneity and the possible dimensions of variability of the symptoms that affect the individuals included in these pictures.

QUESTION AND OBJECTIVE

In view of these facts and without the pretension of exhausting the subject, we seek, in this article, to answer the following question: how has the literature studied/presented the aspects that go through human development, experienced daily by people with ASD? Thus, we aimed to investigate them, considering some reports collected in interviews with the persons themselves, their families, health, and education professionals, based on articles from the Scientific Electronic Library Online - SciELO¹, portal of Brazilian journals, published between the years 2008 and 2021.

THEORETICAL AND EPISTEMOLOGICAL REFERENTIAL

We consider it important to clarify the theoretical perspectives that guided the undertaking of this research, such as the work of the Laboratory of Inclusion, Symbolic Mediation, Development and Learning (LIMDA), from the School of Education at the Federal University of Rio de Janeiro (UFRJ), of which we are an integral part, which are based on studies that consider development as a social genesis, i.e., in close relationship with the sociocultural context (REGO, 1999).

Thus, we refer to the studies by Vygotsky (2003) who, by focusing on the development of complex forms of human behavior, analyzes the issue of biological maturation as a secondary factor in this process, since such forms depend on the interaction of the subject with its culture. Therefore, for him, what is innate is not enough to produce the individual in the absence of the social context.

Vygotsky (2003) presents a theory of development that reflects the subject in its entirety, dialectically articulating the internal and external aspects and considering the relationship of this subject with the context, history, society and culture in which it is inserted (FREITAS, 2002). In this way, the development is not a predictable, universal, linear or gradual process, but a web that comprises a systemic interdependence (BRONFENBRENNER, 1996).

In this context, we validate his considerations about the process of socially constituted development, in a reciprocal action between the organism and the environment, emphasizing that such a process would occur from the constant interactions between them, since the most refined psychological forms would be the result of this social life (BERSCH; YUNES; MOLON, 2020). These notes reiterate human development as a phenomenon of continuity, i.e., likely to occur throughout life (in successive generations) and over historical time.

Thus, we have a panorama that meets what Smolka and Góes (1993, p. 10) emphasize, especially when they state that "what seems fundamental in this interpretation of the subject's formation is that the individuation movement occurs from the experiences provided by culture" and that, therefore, it would have a "character more of revolution than of evolution". Therefore, "the subject is made as a being differentiated from the others but formed in the relationship with the other: singular, but socially constituted, and, therefore, in an individual conception, but not homogeneous" (SMOLKA; GÓES, 1993, p. 10).

Our other theoretical pillar is in dialogue with Vygotsky and is based on the studies of Bronfenbrenner (1996), which, from contextualist assumptions, associates the experiences at the individual level with sociocultural and historical dimensions, i.e., not restricted to interpersonal relationships, but rather, to the relationships between proximal and distal environments (SENNA, 2011).

Bronfenbrenner (1996) points out the issues concerning human development as changes in the way a person perceives/deals with the environment. For him, as discussed in Senna (2011, p. 15), learning and development are interrelated and, through proximal processes, "[...] defined by the power to promote competencies or dysfunctions depending on the forms of interactions between people and other people, people and objects or symbols", defined by him as significant relationships, there are the drivers of development and learning.

The theorist, when discussing what he defined as "bioecology of human development", makes propositions regarding the "(re)integration of the human being in its micro, meso, exo and macrosystemic dimensions²" (SENNA, 2011, p. 18). The systemic thinking, supported by Bronfenbrenner (1996), according to Senna (2011, p. 22), "considers that human development results from the joint activities of people. Such activities enable the complexification of the individual/collective development process".

It is interesting to note that the psychological organism referred to by Bronfenbrenner (1996), as discussed in Senna (2011), is:

[...] more than the individual's biography over time, it is a living organism in intense internal activity, in temporal development and according to the context in which it finds itself. The proximal context, or microsystem, will provide (or not) the reciprocal interaction and the author makes a point of presenting the importance of proximal processes and their effects. (SENNA, 2011, p. 22).

Entering the discussions about development and articulating them to the Autistic Spectrum Disorder, ASD, reaching them to our theoretical contribution, we highlight that, in the Bioecological Theory, development goes through processes of reciprocal interaction that occur progressively, over time, between the developing person and the context (BRONFENBRENNER; CECI, 1994; BRONFENBRENNER, 1996; BRONFENBRENNER; EVANS, 2000). This interaction refers to the "proximal processes" that comprise the transfers between developing human beings and other people, objects, and symbols in the environment. As an example, we have the family context, dimension in which these relations occur throughout time and whose interaction becomes progressively more complex. It is the proximal processes, that is, the relationship with the other and with the environment, that promote development, and, in this case, of both the person with ASD and the family to which he or she belongs.

It should be noted that the Autistic Spectrum Disorder is a classification determined by the Diagnostic and Statistical Manual of Mental Disorders/DSM-V (AMERICAN PSYCHIATRIC ASSOCIATION, 2013), which comprises the autistic disorder, the Asperger's disorder and the pervasive developmental disorder. These disorders are marked by lags in social interaction, determining losses in the ability to relate to others, in addition to language deficits and behavioral changes. Their symptoms manifest themselves in a continuum of support levels demanded in two areas: social communication and restricted and repetitive behaviors.

In most cases, parents are the first to notice their children's developmental difficulties, which are usually related to deficits in socialization skills, inflexibility and/or behavioral problems, and verbal language delay, the absence or delay in speech being the main symptoms that lead them to seek professional help. The suspicion that something is not going as it should awaken the parents, especially the mothers, to the beginning of a long journey.

The study by Lemos et al. (2016) gives a history of the nosology and reports that autism was first described by psychiatrist Leo Kanner in 1943, based on the idea that unaffectionate parents could trigger their children's altered behaviors. The authors continue their history and point out that, beginning in the late 1980s, autism came to be considered a Global Developmental Disorder (GDD) in the International Code of Diseases, ICD 10 (1989), and Invasive Developmental Disorder (IDD) in DSM IV (1994). In 2013, the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) started adopting the term "Autistic Spectrum Disorder" (ASD). The evolution in nosology was studied by Lopes (2021):

Throughout the 1970s and 1980s, autism came to be seen as a cognitive disorder. At this time, it stopped being understood as a condition that involved simple emotional and social withdrawal and started to be considered as a developmental disorder, involving severe deficits in cognition with probable origin in some form of brain dysfunction. As of the late 1980s, several authors began to thoroughly research this social impairment and to adopt a developmental approach (LAMPREIA, 2004). However, we know that there is still no evidence and no studies on the cause of this disorder. What there is only speculation about its origin (LOPES, 2021, p. 22).

It turns out that, according to Camargo et al. (2020, p. 3), "ASD is no longer classified as a rare disorder". Olivati and Leite (2019) estimate in numerical terms that the prevalence of people with autism is around "1% among the adult population (BRUGHA et al., 2011). However, studies conducted with the child age group report that one in 59 children aged 8 years have a diagnosis of the disorder" (BAIO et al., 2018, p. 2). About university experiences, the authors report that in Brazil, according to data from the Anísio Teixeira National Institute for Educational Studies and Research (INEP, 2018), 1.9% of the enrollment of self-declared students with disabilities were autistic (in absolute numbers, a total of 754 students with Autistic Spectrum Disorder; among these, 378 diagnosed with Childhood Autism, and 376 with Asperger Syndrome), in face-to-face and distance learning modalities. However, they point out that about 38% manage to finish Higher Education.

In the specific case of individuals with ASD, it would be possible to differentiate their proximal processes under several aspects; as an example, we can cite two types of results that would involve the analysis of the behavior of these individuals, regarding: competence (acquisition and development of knowledge, skill or ability to manage one's own behavior); and dysfunction (difficulties in controlling behavior in different situations and domains of development). From this perspective, we understand that the exposure of the person with ASD to stimuli and diversified contexts is one of the factors that strongly interfere in this development, and it can be evaluated from various perspectives that range from the permanence and respective frequency and intensity of manifestations, interruption, to the duration and predictability upon exposure to these stimuli (BRONFENBRENNER; EVANS, 2000).

Thus, family interaction will not necessarily impact this person in a positive way, since it is not a linear relationship under a positivist view of cause and effect. Numerous factors must be considered and analyzed, which interfere in the process of this development. The way the family interacts, the extent to which this happens, and the direction of the proximal processes (whether the interaction is reciprocal, or whether it is just the family trying to relate to the subject with ASD), vary systematically. This variation is related to a set of characteristics of the developing person, the environmental context, the continuities and changes that occur over time, the historical period, and the nature of developmental outcomes (BRONFENBRENNER; CECI, 1994; BRONFENBRENNER; EVANS, 2000). Thus, family involvement is susceptible to the influence of numerous variables - such as the characteristics of the person with ASD, the context in which he or she is inserted, as well as the historical period in which this is affirmed - which will affect how he or she will be involved, the content and even the intensity of this involvement, or the time that the family interacts with him or her.

The proximal processes are essential for the development of each person's biological abilities and genetic potential, as they enable personal resources to be stimulated and developed (BRONFENBRENNER; CECI, 1994). Thus, it is in the interaction with others that each person has experiences, being able to expand their abilities, in short, to develop themselves.

It is in this referential of human development that we anchor the research described here, since investigating this development, considering fragments of reports from interviews with the people themselves, their families, health, and education professionals, can corroborate in order to point out the main aspects that affect this discussion, from the point of view of the "protagonists" themselves and their respective microsystems, mesosystems, exosystems and macrosystems.

METHODOLOGICAL APPROACH

As a methodological perspective, we chose the integrative literature review, since it can contribute to the expansion of existing knowledge, from what is evidenced within the limits of the research already conducted, in addition to enabling the identification of possible gaps and trends in scientific production on the theme that we propose to outline (MENDES et al., 2008). The undertaking of this research is justified by the importance of knowledge and interpretation of the scientific production concerning the study, since, in addition to tracking works that, to some extent, support and contribute to the formulation and implementation of public policies, it may inspire future studies.

As we previously announced, for the purposes of this review, we focused on the narratives collected at SciELO using the following search equation: advanced search; peer-reviewed texts published up to the year 2021; and the keywords autism and interviews, combined with the Boolean operator AND. As a result of these filters, we had as a result 28 publications from the year 2008, and all of them from the Education, Psychology, Medicine, and Nursing areas.

Aiming at a greater depth, for the stages of analysis and discussion, the articles were read, reread, coded, and categorized using the software ATLAS.ti (9.0), which helps the process of Content Analysis (BARDIN, 2016), defined as:

[...] a set of techniques of communication analysis aiming to obtain, by systematic and objective procedures to describe the content of the messages, indicators (quantitative or not) that allow the inference of knowledge regarding the conditions of production/reception (inferred variables) of these messages (BARDIN, 2016, p. 48).

From reading the articles, we created 30 codes, which we organized, by thematic approximation, into three categories: diagnosis and health, education, and family relationships. As expected in an integrative review, we used, for this categorization, the following guiding question: what announcements and denunciations can be captured in the narratives of and about people with ASD about the development process? We did the analysis itself, that is, the interpretation and inferences, from different fields, having as theoretical-epistemological-methodological referential the bioecological perspectives of Bronfenbrenner and the socio-historical-cultural of Vygotsky.

From this survey, knowing a little more about the lives of people with autism and their relationship with the related social issues, we identified key points that we consider need more attention by researchers in the area, as well as by public policy makers. In view of the above, in this article we present and discuss the referential adopted and then, we explain the review carried out and the results found, discussing the categories identified; finally, we announce issues still amenable to exploration in future studies and research.

We corroborate the perspective that the production of knowledge in research is aligned with the idea of learning as a shared social process that generates development (FREITAS, 2002). Therefore, we understand this methodological proposition as consistent with the Vygotskyan dialectical theory, in the scope of the understanding of human phenomena, since, based on the premise of the social constitution of higher mental functions, in an interactive process made possible by language and that precedes personal appropriation, we also see research as a relationship between subjects, a relationship that becomes a promoter of development mediated by another. Based on these interactional aspects, we agree with Freitas (2002) when dealing with the researcher and the investigated as two subjects in interaction, especially when stating that the researcher is part of the research situation itself; therefore, neutrality is impossible and, consequently, his action and the effects it provides constitute elements of analysis.

We also refer to the premise that weaving analyses in extensive databases presents challenges to the researcher and that, therefore, at this moment, the theoretical-methodological clarity will act as an essential support, since it can point guiding sieves to them (ROSSETI-FERREIRA; AMORIM; SILVA, 2000). In our case, we guide the considerations by the network scheme, that is, depending on the questions and the moment of the process under analysis, and we prioritize certain aspects of the network. Different people, fields of interaction, or scenarios assume greater or lesser relevance, as occurs in figure-and-background movements, in which detailed analyses alternate with a more general look at the material as a whole.

As explained in the introductory part, we carried out the integrative review of publications aiming to find direct reports about these people, since this would bring a differential to the work, referencing the own perceptions/conceptions of these subjects from the information about the problems experienced daily and that go through their developments³. For this review, we based ourselves on the model indicated by Souza, Silva, and Carvalho (2010), which inspired us to adapt the records presented here. We considered the integrative review method based on six steps: elaboration of a guiding question; literature search in databases; registration or data collection; critical analysis of the research found; discussion of results; and presentation of the integrative review itself.

We performed the qualitative analysis of these data based on the Content Analysis technique (BARDIN, 2016), with the aid of the ATLAS.ti 9.0 software. It consists of the following main phases, which we describe below.

1. pre-analysis, which corresponds to a period of instructions, seeking to systematize initial ideas; in this phase there are three important missions: the choice of the documents that were analyzed, in this case, the 22 selected articles; the formulation of hypotheses/objectives, which, in this case, are related to the understanding that, beyond diagnosis, there are other issues that cross human development and that identifying them would come to contribute in verifying gaps in studies/research and in the possibility of (re)creating public policies that, in turn, could enhance development processes; and the elaboration of indicators, such as the division of the collected material by areas of knowledge, among them Medicine, Psychology, Education, and Nursing, which help in the final analysis;

2. exploration of the material, which is a long phase in which codification, decomposition, or enumeration operations are carried out, enabling interpretations and inferences; in this phase we identified 30 codes, which we organized into three analysis categories - diagnosis and health, education, and family relations -, which we will present in networks, below.

3. treatment of the results obtained and interpretation, a stage in which the raw results obtained in the research are given their meanings. It is important to point out that we sought to carry out an interpretivist and contextualist analysis of the data. For the purposes of this article, we chose to focus on the analysis of the codes with the highest incidence, although we did not discard the others, since they contributed to build the meaning of each of these categories.

RESULTS AND DISCUSSION

Following the steps foreseen in an integrative review, we proceeded with the literature search in the chosen database and organized the articles collected, according to Chart 1.

Chart 1
Articles searched in SciELO

Chart 1
continuation

As already mentioned, three categories emerged from the Content Analysis (BARDIN, 2016). The first of them, "diagnosis and health", gathered 13 codes; among those with more frequency, we highlight the four with greater evidence, as shown in Chart 2: the contact with the diagnosis (75 citations), which refers to the impact suffered by the family; the social issue (65 citations), which deals with the repercussions in the socioeconomic spheres, in these contexts, and the support networks that would act as support; the diagnosis process (46 citations) refers to the tortuous path taken by the family until the definition of the picture; and, also, autism (46 citations), which addresses the definitions of autism given by the authors and researched.

Source: Elaborated
by the authors.

The category "education", presented below, had five codes. Among them, we chose to deepen the analysis on the two that pointed to a higher frequency: teacher training (83 citations) and learning process (40 citations). The first refers to the difficulties encountered by teachers in the teaching and learning process of the person with ASD. The second is related to the particularities in the development of these people and that may affect their school/academic life.

Chart 3
Network: Education category

The third and last category, "family relations", illustrated below, encompassed 12 codes, among which we chose three for further study because they showed greater prominence: the one concerning the family (45 citations); the one concerning mothers (36 citations); and finally, the one concerning co-parenting (30 citations). "Family" concerns the (re)construction of families, from the moment of diagnosis, and their relationships among the members of these micro (nuclear family) and mesosystems (other relatives). The code "mother" highlights the mothers' self-perception about becoming a mother from a perspective linked to autism. "Co-parenting", in turn, is related to the issue of the presence and/or absence of the father figure and its crossings in the education of the autistic child.

Chart 4
Network: Family Relationships Category

We emphasize that these networks contributed to a dialectical and complex view (MORIN, 2000) of the whole, of the categories and their associated parts, the codes, since they constitute units of meaning. At the same time, we intended to contribute so that readers could follow the path of organization and subsequent analysis of the data found in accordance with the stages of integrative review that followed: critical analysis of the research and presentation of the discussion of results, by category.

DIAGNOSIS AND HEALTH

The relationship between families and health services begins with the parents' concern about their child's differentiated behavior. This process begins with a search for diagnosis, which leads them to follow a trail through health and care services. According to the articles analyzed, we notice that these families seek the care institutions to obtain explanations about the atypical development process.

Ebert, Lorenzini, and Silva (2015), when presenting the complaint of a mother, point to the difficulty of identifying the condition with the respective indication of the ICD (International Classification of Diseases) by the professional who would need to give the diagnosis, the doctor. In addition to this, there is the long waiting time for consultations and the light manner in which they often take place. Many times, the nurses or other health professionals who live longer with these children already have a greater sensitivity to identify characteristics present in ASD.

[...] a mother (M7) reported that nurses who already knew the child, because they had more contact from routine consultations, mentioned that the child had autism. However, the medical diagnosis was not yet confirmed.

Several nurses would say in routine consultations: "I think your child has autism". They knew him and said: "It's autism!". [...] The neurologist would only say that he [the child] had mental retardation. [...] I needed the ICD, and the neurologist said it was mental retardation. And I would ask: "What kind of retardation does he have?" "He has one year of retardation", the neurologist would say (M7) (EBERT; LORENZINI; SILVA, 2015, p. 53).

If the wait for the diagnosis is distressing, the moment of its confirmation is impacting. The texts present numerous reports of mothers who claim to have received it without any explanation of what it was about and, often, in inappropriate environments for a conversation of this content, such as hospital corridors.

When the doctor said: "Your child has autism", I immediately thought the worst. I didn't know what it was and that made me even more desperate at the time because I didn't know what it was. So, the fact of not knowing made it even worse at the time of receiving the news because I did not know what it was [...] maybe if I knew it could have been less bad (E6) (PINTO et al., 2016, p. 4).

A diagnosis of ASD is a relevant event in the lives of parents, and communicating this information is an important and difficult task. Giving and receiving a diagnosis of ASD represent key points regarding the possibility of the child's development and the parents' adherence to the planned treatment (AGUIAR; PONDÉ, 2020). Added to this is the fact that the diagnosis opens doors for access to social benefits. However, while admitting the receipt of the diagnosis as an achievement, we consider this the beginning of a new search, that of treatment. It was also possible to see in the data evidence of a fragility in the follow-up and assistance to people with autism and their families, as highlighted by Bonfim et al:

Occasioned, mainly, by the unpreparedness of health professionals due to little knowledge on how to assist children and families, by the feeling of insecurity when providing care, by the difficulty of organization and integration of the Health Care Network and the stigma related to mental disorders. (BONFIM et al., 2020, p. 2).

Still in this scenario, we note that the supply of public services available, or where the State acts less vigorously in this supply, is presented as insufficient or inadequate. However, in the private sphere, families provide regular care to their children and, therefore, boost their development, which demonstrates the concrete representation of inequalities:

In Volta Redonda, families with sufficient financial conditions to afford the high costs of treatment provide weekly care to their children, adult autistic, in private clinics, while the others rely on the available treatment - however, considered "insufficient" and "inadequate" - in the public mental health network (Psychosocial Care Centers, Caps) of the region (NUNES; ORTEGA, 2016, p. 968).

In this list of inconsistencies, Nunes and Ortega (2016) argue that, in addition to public policies that encourage the expansion of care and social support networks offered to autistic people, other movements have been organized by families in favor of the fight for the right to quality treatment. The authors ponder that the family members' claims indicate that the care offered in these centers (Psychosocial Support Networks - RAPS⁴ /SUS⁵ /CAPS⁶ /CAPSI⁷) generate dissatisfaction, as reported by a mother.

There is not one person I have talked to who attends a CAPS and is satisfied, precisely because of this: they [CAPS professionals] cannot see the peculiarities of autistic people, they think that the family members of autistic people want privileges. They can't see that it is such a specific syndrome that can't be put in the "ah, everyone has to live here" category. I believe that we have to live with everyone, as long as we first learn to live with everyone. Until we get to that point, we do need specific things. [...] My criticism [to CAPS] starts from this side. There is a discourse that the person is seen as a single being, but, in practice, it is different (NUNES; ORTEGA, 2016, p. 970).

Although considered incipient, these assistances are fundamental, to the extent that, "through this social support, it is possible to receive emotional, cognitive and even financial support⁸ " (SMEHA; CEZAR, 2011, p. 47). Besides the officially constituted institutions - which can broaden the view of families and contribute to the creation of a social network based on mutual support - there are reservations regarding the "closure" that can cause, considering that they end up being configured as exclusive spaces. This point is highlighted by Constantinidis, Silva, and Ribeiro (2018) when dealing with social support restricted to mothers' groups:

One can think that this mother, by identifying only as the mother of an autistic child, seeing no meaning in other possibilities of existence - "get me ready for what?" - and feeling supported only in groups of mothers with this same profile, may restrict her universe, in a movement that places her isolated from the world, just like her child with autism (CONSTANTINIDIS; SILVA; RIBEIRO, 2018, p. 55).

This universe considers the characteristics of autism addressed by the manuals and referenced above. Some authors, such as Aguiar and Pondé (2020), mention the fact that professionals suggested that the problem could reside in the way mothers raised their children, sometimes stating that they invented problems that did not exist, generating a culture of discredit, making these mothers only feel accepted, in fact, in exclusive groups, free from judgments that would blame them. This information brings us back to the fact that, even so many years after Kanner's description (1943), the false idea that autism has to do with an unloving interaction between the mother and her child remains, and current research (EVANGELHO et al., 2021) point to a biological or neurogenetic incidence, which is an aspect in itself that mobilizes these mothers, besides the educational factors.

In the analyzed studies, autism has been explained especially from three perspectives: developmental, cognitive, and neurodiversity. In the first, the typical development is taken as the basis to understand a differentiated process of the child. Thus, it is considered that this child presents a disorder, or disturbance in development, which may be associated with biological issues. In the cognitivist perspective, the focus is on the subject's commitment to understanding other people's mental states, which is called theory of mind. In practice, the work with this public is focused on stimulating the perception and understanding of the several mental states of people interacting in this context and in the way they express themselves, seeking to expand and improve their communication strategies. In the last years, from social movements fighting for the rights of the person with autism, a new paradigm has emerged, that of neurodiversity, which "recognizes autism as a disability, although it also considers it a neurodiverse condition. Aligned with the social model of disability, Neurodiversity has as a key assumption that all forms of neurological diversity should be respected." (BRILHANTE et al., 2021, p. 418).

Autism presents itself in various forms, it is common to hear that there is no autistic person the same as another. The spectrum concept gives this idea, that the levels of involvement can vary between those who need more support and those who need less support. The difficulties in communication and social interaction of the person with autism directly affect those closest to them, in most cases the nuclear family, especially the mother. As children with autism tend to present difficulties in performing common activities of daily life, a relationship of dependence on care is established, which generates significant changes in the family routine.

We must emphasize that these changes, especially with the International Convention on the Rights of Persons with Disabilities (UN, 2006), need to consider development from a biopsychosocial point of view⁹, i.e., that extends throughout life and starts to add elements referring to youth and adulthood, such as sexuality, access to higher education, and insertion in the labor market. We consider that these factors, for these mothers, present themselves as challenges shared in the support groups. According to Segeren and Françozo (2014, p. 44), "mothers of autistic youth report not knowing who to turn to and how to resolve the situation regarding sexuality, saying that they feel lost with the situation." There is information about the processes of infantilization of people with disabilities, including those with ASD, drawing attention to the stereotype of innocence, with the denial of the sexuality of people with autism, materialized in the expression "Blue Angel", which, for Brilhante et al. (2021), would act as a discursive process, standardization their infantilization. Added to this is the fact that difficulties in understanding the social norms related to ASD, specifically, contribute to the stigmatization of these young people in the social context.

The teacher seemed confused by my question. And I just said that I had a hard time letting myself be touched, but that I wanted to be touched. She looked at me in amazement and said that I shouldn't think about such things. But I didn't understand why I couldn't ask that in class if it was a reproductive system class. After discussing this episode in his therapy and dialoguing with his parents, Naruto reports having realized that: I have to be careful, because there are people who can abuse my sincerity. People don't usually deal well with these issues. I understood that, but it doesn't change how I feel [...]. To make matters worse, I still become the stranger, the weird one, and this doesn't help at all (BRILHANTE et al., 2021, p. 420).

The adult phase is marked by exclusion and invisibility, highlighted by Nunes and Ortega (2016), who highlight the performance of the group of autism activist parents, the Azul Claro, located in Volta Redonda, municipality of Rio de Janeiro, in which adult autistic people are contemplated in their demands. According to the authors, many adults depend on integral care, such as hygiene, food, and medication, and emphasize the influence of treatment opportunities in the development process. We understand that these aspects are closely related to the possibilities of access to educational stimuli, that is, we highlight the place of school as a privileged space for development and that, therefore, may, to a greater or lesser extent (depending on the character of access and permanence), benefit these subjects, which we will better highlight next, when we explain the category education.

EDUCATION

We consider that the educational processes are closely related to the integral care mentioned in the previous category once the stimuli to the autonomy of this developing person are linked to the real possibilities of advances and improvements in the condition.

Smeha and Cezar (2011, p. 47) point out that "the school environment is another important reference for autistic parents. After the tireless search for treatments for their children, there is also the need to integrate them into society". The school reveals itself, therefore, as an important support network for families.

In addition to the educational role, the authors are supported by Jerusalinsky (2007) to point out, also, that other dilemmas will be inaugurated, once considering the school grouping parameter of the students, based on the age bracket, this mechanism generates impacts, once there is a tendency for comparisons to occur between these subjects and the others, facing the development milestones:

Integrating the child into the community is a moment that generates crisis, because already in the first outings, in places where there are other children, it is noticeable to parents the emergence of social rejection. Therefore, the moment the child enters school also materializes the issue of difference and limits in relation to learning (JERUSALINSKY, 2007, p. 6).

We understand that this social rejection may be linked to the limits observed in relation to learning, compared to their peers, since they often perceive little possibility of exchange with the student with ASD. Such limits are built from a series of gaps in the teaching and learning process that the Multifunctional Resource Rooms (MRR)¹⁰ have tried to address. However, we recognize a misunderstanding in the interpretation and materialization of the perspective of Special Education in regular school, in which these SRMs are included, because we believe that this policy should occur in a complementary/supplementary way, and not as a substitute, as we have been following in the national scenario.

The texts found also bring a demand, somewhat silenced, for the school to break with its regulatory distance established between parents. This distance is materialized at the school gate, where parents leave their children to the care of the institution, which, in turn, develops its pedagogical work routine, regardless of the domestic routine of the students, who most of the times adapt not only to the routines, but to the people and even to the environments.

On the other hand, we mark our defense of the family-school partnership and counterpose it to the idea of insertion of the family only as contingency to the punctual needs that impose themselves to the school daily life, as explained in the article by Smeha and Cezar (2011, p. 48): " They only accept 'F1' on the condition that I stay waiting. So now it has been three years since he has been in school. I drop him at the door, I wait the whole period [...], and any eventuality I'm here."

These arguments bring us back to the lack of structure (physical, logistics and staff) still in force in educational institutions and also to the difficulties pointed out in dealing with differences, which we understand to be facilitated when there is an effective approximation between school and families, since these will bring to this new environment a socio-historical perspective, i.e., the one that references the legitimization of the processes experienced by these subjects in different contexts and times.

Even acknowledging that the core of this article is not in discussing the implications of these processes in the recent pandemic scenario, we admit that there were specificities that went through this period, in which hybrid education was imposed and, with it, the entrance of the school into the homes. This indicated the need to establish closer and more sincere relationships with families, who became its agents at home. Through the different communication platforms and social networks, in general, the school has come closer to the parents.

We noticed that the texts analyzed discussed the schooling process of the student with autism from a perspective of inclusion based more on the development process than on the strategies carried out by school institutions. At the same time, we credit to inclusion not only people with disabilities, but the contexts that welcome each human being, regarding their full social participation. In this view, differences can be considered opportunities to enrich interactions among the school community, to bet on heterogeneity as a potentiating factor of diverse and stimulating pedagogical actions for the class as a whole (SANTIAGO; SANTOS; MELO, 2017).

In the wake of the inclusion process focused on student development, we highlight the study of Farias, Maranhão and Cunha (2008), which investigated the professional practice of two teachers of kindergarten classes based on the Mediated Learning Experience Theory, by Reuven Feuerstein and Refael Feuerstein (1991). According to this theory, the teacher is someone who is not just a mere transmitter of knowledge, but someone who can help the student to make sense of this knowledge. This study does not make it clear if the teachers knew this theory, which, in our view, would make a difference in their performances, and immediately brings us back to the debate about teacher training and the importance of referencing the presence or not of a support professional, as highlighted by Camargo et al. (2020):

The national literature points out that the vast majority of educators do not feel prepared for the demands required by school inclusion, demonstrating that the teacher's performance is essential for school inclusion to occur satisfactorily (BOSA, 2006; SCHIMIDT et al., 2016). Moreover, for many teachers, the possibility of inclusion of children with disabilities refers to those who do not require a restructuring and adaptation of the school (BOSA; CAMARGO, 2009), such as children with Autistic Spectrum Disorder (ASD) (CAMARGO et al., 2020, p. 3).

Within the discussion on teacher education, some research situates the daily confrontation experienced by teachers of students with ASD and highlight the specific demands that challenge them to a more flexible and reflective action, without ready-made recipes or defined structure. The presence of these students puts the teacher in a position to constantly redo his or her practice, updating it to meet the needs posed. Lemos, Nunes and Salomão (2020) present studies that suggest adjustments that need to be made in the classroom. Among them, we highlight the modulation and intonation of the speech addressed to them, the search for activities that make sense and that are accessible, as well as more meaningful classes. Aporta and Lacerda (2018) also report on the need to use "special procedures" in the teaching structure of the student with autism, such as preparing the subjects to be worked on, considering what the student already knows, to, from there, expand his knowledge. The literature shows that it is possible to educate this student in the regular classroom but stresses the urgency of investment in the teacher training process.

For us, it is clear that the teacher training model as it has been usually presented is not working anymore. We defend the idea that, through contextualized teacher training, based on experiential learning, in formative processes, it will be possible to resize their praxis, contributing to a transformation reflected in these processes (PINAZZA; FOCHI, 2018). We understand that this stems from an optic based on dialogic formative contexts, i.e., in a peer-to-peer training, on the "school ground"; that is, human and dialogic educators would be "the engine of proximal processes", contributing to "make human beings human" (paraphrasing Bronfenbrenner) "in a more just and solidary educational system" (PINAZZA; FOCHI, 2018, p. 18).

When we emphasize the dialogicity and the human character in the context of teacher education, we find it essential to weave relationships not only between these aspects and the teaching context; we advocate, above all, extending them to other social relationships, especially the private space of the families of these subjects, since such linkages constitute the first and most important microsystem, therefore, strictly linked to the character of proximal processes. These issues will be better deepened in some considerations in the next category analyzed.

FAMILY RELATIONS

This category gathered 12 related codes which will be discussed, especially those with the highest number of citations, that is, family, mothers and co-parenting, as we understand that these were the ones that received more attention in the researchers analyzed. Much of the research points to the central place of the subject with ASD in the family and its repercussions. This subject, metaphorically, is seen as a sun around which the other elements of the family orbit, as Constantinidis, Silva, and Ribeiro (2018) show when highlighting the report of a mother:

I wouldn't say it's being a hostage, but it's a radical change [...] everything has changed. In fact, everything changed, the home routine changed, structure of the furniture, the way he would arrive and drop a backpack, a bag. So, everybody's life changed [...] I don't go to concerts at the beach. I don't go to anything that has noise. I don't go out at night (M1). (CONSTANTINIDIS; SILVA; RIBEIRO, 2018, p. 52).

The aforementioned authors describe that "daily activities, schedule routines, regardless of the uniqueness of each family member, are altered" (CONSTANTINIDIS; SILVA; RIBEIRO, 2018, p. 52). This impacts directly on daily life, especially that of the mother, who, most of the time, stops working to fully dedicate herself to the care of her child.

The care routine, according to them, is arduous, difficult, and tiring, as referred to by mother P4: "I keep thinking how do I manage? I keep thinking, my God [...] sometimes, I'm dead tired, but I [...] it seems that there is something inside me that I want more [...]" (SMEHA; CEZAR, 2011, p. 46).

In a view that considers the development from the proximal processes established between different subjects - in this case, the family microsystem, that is, the relationship between parents and children (BRONFENBRENNER, 1996) -, we saw how the movement of restructuring of roles, routines, and even physically, the places where they live, affects this development, since the mental health, in the case of the mentioned example, of the mother, is directly impacted by the intense dedication, which ends up generating an overload in her life. This brings us to the need for a more comprehensive care and support in the form of public policies, of social attention, not only directed to the person with ASD, but to the family as a whole, but especially to the mother. This is explained by the fact that the precariousness of this support to the family microsystem impacts, to a greater or lesser extent, the child's development. Access to school, to medical, psychological, and speech therapy appointments triggers a development dynamic that is infinitely different from cases in which this access is restricted or denied. In a country as economically unequal as Brazil, having access to goods and services is an exception!

Still in this area, the studies by Bonfim et al. (2020) and Pinto et al. (2016) highlight the concern of mothers regarding the lack of support offered by other family members, especially the father, which ends up reflecting in other spheres of maternal life, especially professional, and alert to the fact that "[. ...] the full dedication and the centralization of care assumed by the mother, who still needs to give up her professional career and divide herself between her other children, husband, and domestic chores, can generate important physical and mental repercussions" (PINTO et al, 2016, p. 8).

Added to this is the discussion about the roles of caring and providing, the first socially located in a more internal/private sphere, that of the mother, while the second, that of the father, would comprise a more external/public scope, as informed by the study of Smeha and Cezar (2011), which, in our view, reverberates in the potential of co-parenting and its repercussion on the development process: "Husbands contribute mainly with economic support, since women have renounced their professional career. According to Núñes (2007), while the woman stays at home to care for her child, it is up to the husband to work outside and take charge of the financial support." (SMEHA; CEZAR, 2011, p. 47).

Constantinidis, Silva and Ribeiro (2018, p. 53) reinforce this issue and add the discussion about the acceptance of the condition, after the confirmation of the diagnosis. According to the authors, "the family is an important element in this support, but not always available to this mother.

I didn't have much time to think about it, but for me the worst thing about the diagnosis was the father not accepting it. His father never accepted it. I beat him up a lot. [...] I was married, but the father never accepted to take J. to treatment, never. And this I had to fight him because he didn't accept that his son should go to an APAE. He never accepted, he never accepted (M3) (CONSTANTINIDIS; SILVA; RIBEIRO, 2018, p. 53).

Within the scope of our analysis and still with regard to the family microsystem, it was possible to identify that the presence of siblings in the family and their interaction with the autistic sibling may represent opportunities for richer interaction and proximal processes, which will contribute to the development of both. In this sense, Pinto et al. (2016) clarifies that feelings such as concern, patience and love were observed in the siblings and in their relationship with the brother with autism, despite the understandable feeling of jealousy. "[...] The relationship with the siblings is very good. They love him very much. They sleep with him, they have affection. It's always been like that (E7)." (PINTO et al., 2016, p. 7).

Another aspect evidenced in the studies was that, in general, families expect their children to develop, especially in the area of language, so that they acquire greater independence, being able to attend school and relate better with other people. Semensato and Bosa (2017, p. 6) bring the report of a mother saying that "[...] I still hope that João will speak and that by speaking he will learn more about the routines, so, of everyday life, and that he can, if he speaks, that he can attend a regular school.

Within the list of family projections regarding the development of the person with ASD, there is a great fear about the uncertainty of his future, making the search for overcoming the condition allow a more independent and autonomous life, as Semensato and Bosa (2017) inform us:

The fear that the child will need continuous care generates a Sense of Helplessness in couples: "everyone always says that we shouldn't think about it, but we are afraid of the future... He is going to last a long time and I'm not? and then who is going to take care of him? Will he live alone? Where will he live? How? With whom? No, right" [M5] (SEMENSATO; BOSA, 2017, p. 6).

Such notes lead us to believe that, although the role of the family is not unique or preponderant regarding the development of individuals with autism, it is extremely important, since it is in this nucleus that the first and strongest affective and social relationships of people are established, whether with ASD or not, and that may occur or be extended to other contexts (school and therapeutic, for example).

FINAL CONSIDERATIONS

In the integrative literature review carried out, the collected reports announced and denounced realities, which allowed us to identify and highlight some theoretical and analytical gaps. The Content Analysis (BARDIN, 2016), subsidized by the Atlas.ti software tool, enabled the survey of three emerging categories - diagnosis and health, education, and family relationships - which, in turn, were analyzed based on the theoretical and methodological perspectives of Vygotsky (2003) and Bronfenbrenner (1996). Such analysis allowed us to relate personal and social issues, based on the socio-historical and bio-ecological relations that involve the lives of the researched subjects.

In the first category, as we reported, the following aspects were prominent: the waiting and confirmation of the diagnosis of ASD; the insufficient or inadequate offer of services (public or not) aimed at social support; and the discussion about the adult phase of these people, highlighting the invisibility that occurred. The second, education, in turn, brought data that addressed the following issues: the importance of school; the distance between the systems: family and school; and the lack of school structure for effective care to individuals with ASD, highlighting the deficient training of teachers. The third and last one, family relationships, highlighted the change in the family routine, particularly the mother's; the lack of support from other members, especially the father's; and the participation of siblings in this development.

The research highlighted that the birth of a child with autism initiates a complex process of discovery in the face of the diagnosis and family reconfiguration; that the support received, or not, directly contributes to the development process of this person. It also pointed out that more effective proximal processes presuppose the improvement of relationships, contact between people, including virtual ones, with visual and auditory stimuli, with mutual interests, promoting a relational structure of trust. The studies showed that, in the bio-ecology of the person with autism, is the nuclear family headed by an overburdened and poorly assisted mother, the insufficiency of available services, public or private, and the education system as a whole.

A gap observed was the precariousness of support and assistance to the mothers of people with ASD, since they are the closest figures to these subjects and that, within the theoretical perspective adopted, dealing with proximal processes, illustrate the interference of this lack in the child's development process. What we observed is that the mother functions as the main support and needs to enter the focus of attention of the public health and education policies, under penalty of all the efforts, so far undertaken, failing.

Finally, the analysis also pointed out that the school represents one of the most important institutions to support families; however, it needs investments in teacher training for the inclusion process. This, in our view, would be versed in a perspective that understands the professional development of teachers as a bio-ecological relationship, that is, involving the process of mutual and progressive interaction between active and growing teachers and environments affected by constant transformations. Therefore, we defend the contextual and procedural character of this training since the interrelationships occur both in the more immediate contexts and in the broader ones in which teachers interact.

REFERÊNCIAS

• AGUIAR, Márcia Cristina Maciel; PONDÉ, Milena Pereira. Autism: impact of the diagnosis in the parentes. Jornal Brasileiro de Psiquiatria, Rio de Janeiro, v. 69, n. 3, p. 149-155, jul./set. 2020. Disponível em:https://doi.org/10.1590/0047-2085000000276. Acesso em: 25 abr. 2022.
  » https://doi.org/10.1590/0047-2085000000276
• AMERICAN PSYCHIATRIC ASSOCIATION. Diagnostic and Statistical Manual of Mental Disorders: DSM-V. 5th ed.Washington, DC: American Psychiatric Association, 2013.
• APORTA, Ana Paula; LACERDA, Cristina Broglia Feitosa de. Estudo de Caso sobre Atividades Desenvolvidas para um Aluno com Autismo no Ensino Fundamental I. Revista Brasileira de Educação Especial, Bauru, v. 24, n. 1, p. 45-58, jan./mar. 2018. Disponível em:https://doi.org/10.1590/S1413-65382418000100005. Acesso em: 25 abr. 2022.
  » https://doi.org/10.1590/S1413-65382418000100005
• BAIO, Jon et al Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. Morbidity and mortality weekly report, Washington, v. 67, n. 6, p. 1-23, 2018. Disponível em:https://doi.org/10.15585/mmwr.ss6706a1. Acesso em: 25 abr. 2022.
  » https://doi.org/10.15585/mmwr.ss6706a1
• BARDIN, Laurence. Análise de conteúdo Lisboa: Edições 70, 2016.
• BERSCH, Ângela Adriane Schmidt; YUNES, Maria Ângela Mattar; MOLON, Susana Inês. Psicomotricidade relacional sob a ótica de conceitos teóricos de Vygotsky e Bronfenbrenner. Revista da FAEEBA: Educação e Contemporaneidade, Salvador, v. 29, n. 60, p. 308-321, out./dez. 2020. Disponível em:http://dx.doi.org/10.21879/faeeba2358-0194.2020.v29.n60.p308-321. Acesso em: 25 abr. 2022.
  » https://doi.org/10.21879/faeeba2358-0194.2020.v29.n60.p308-321
• BONFIM, Tassia de Arruda; GIACON-ARRUDA, Bianca Cristina Ciccone; HERMES-ULIANA, Catchia; GALERA, Sueli Aparecida Frari; MARCHET, Maria Angélica. Vivências Familiares na Descoberta do Transtorno do Espectro Autista: Implicações para a Enfermagem Familiar. Revista Brasileira de Enfermagem, Brasília, v. 76, n. 6, p. 1-9, 2020. Disponível em:https://doi.org/10.1590/0034-7167-2019-0489. Acesso em: 25 abr. 2022.
  » https://doi.org/10.1590/0034-7167-2019-048
• BRASIL. Ministério da Educação. Portaria nº 13, de 24 de abril de 2007 Dispõe sobre a criação do "Programa de Implantação de Salas de Recursos Multifuncionais". Brasília, DF: Ministério da Educação, 2007. Disponível em: Disponível em: http://portal.mec.gov.br/index.php?option=com_docman&view=download&alias=9935-portaria-13-24-abril-2007&Itemid=30192 Acesso em: 25 abr. 2022.
  » http://portal.mec.gov.br/index.php?option=com_docman&view=download&alias=9935-portaria-13-24-abril-2007&Itemid=30192
• BRILHANTE, Aline Veras Morais; FILGUEIRA, Leila Maria de Andrade; LOPES, Samuel Verter Marinho Uchôa; VILAR, Nathalie Barreto Saraiva; NÓBREGA, Lívia Rocha Mesquita; POUCHAIN, Ana Juarina Magalhães Veríssimo; SUCUPIRA, Luiz Carlos Gabriele. “Eu não sou um anjo azul”: a sexualidade na perspectiva de adolescentes autistas. Ciência e Saúde Coletiva, Rio de Janeiro, v. 26, n. 2, p. 417-423, fev. 2021. Disponível em:https://doi.org/10.1590/1413-81232021262.40792020. Acesso em: 25 abr. 2022.
  » https://doi.org/10.1590/1413-81232021262.40792020
• BRONFENBRENNER, Urie. A ecologia do desenvolvimento humano: experimentos naturais e planejados. Porto Alegre: Artes Médicas, 1996.
• BRONFENBRENNER, Urie; CECI, Stephen J. Nature-nurture reconceptualized in developmental perspective: a bioecological model. Psychological Review, Washington, v. 101, n. 4, p. 568-586, 1994. Disponível em:https://doi.org/10.1037/0033-295X.101.4.568. Acesso em: 25 abr. 2022.
  » https://doi.org/10.1037/0033-295X.101.4.568
• BRONFENBRENNER, Urie; EVANS, Gary. Developmental science in the 21st century: Emerging questions, theoretical models, research designs and empirical findings. Social Development, [S. l.], v. 9, n. 1, p. 115-125, 2000. Disponível em:https://doi.org/10.1111/1467-9507.00114. Acesso em: 25 abr. 2022.
  » https://doi.org/10.1111/1467-9507.00114
• BRUGHA, Traolach S.; MCMANUS, Sally; BANKART, John; SCOTT, Fiona; PURDON, Susan; SMITH, Jane; BEBBINGTON, Paul; JENKINS, Rachel; MELTZER, Howard. Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry, [S. l.], v. 68, n. 5, p. 459-465, maio 2011. Disponível em:10.1001/archgenpsychiatry.2011.38. Acesso em: 30 abr. 2022.
  » https://doi.org/10.1001/archgenpsychiatry.2011.38
• CAMARGO, Síglia Pimentel Hoher; SILVA, Gabrielle Lenz da; CRESPO, Renata Oliveira; OLIVEIRA, Calleb Rangel de; MAGALHÃES, Suellen Lessa. Desafios no processo de escolarização de crianças com autismo no contexto inclusivo: diretrizes para formação continuada na perspectiva dos professores. Educação em Revista, Belo Horizonte, v. 36, p. 1-22, 2020. Disponível em:https://doi.org/10.1590/0102-4698214220. Acesso em: 25 abr. 2022.
  » https://doi.org/10.1590/0102-4698214220
• CONSTANTINIDIS, Teresinha Cid; SILVA, Laila Cristina da; RIBEIRO, Maria Cristina Cardoso. “Todo mundo quer ter um filho perfeito”: vivências de mães de crianças com autismo. Psico-USF, Bragança Paulista, v. 23, n. 1, p. 47-58, jan./mar. 2018. Disponível em:https://doi.org/10.1590/1413-82712018230105. Acesso em: 25 abr. 2022.
  » https://doi.org/10.1590/1413-82712018230105
• EBERT, Michele; LORENZINI, Elisiane; SILVA, Eveline Franco da. Mães de crianças com transtorno autístico: percepções e trajetórias. Revista Gaúcha de Enfermagem, Porto Alegre, v. 36, n. 1, p. 49-55, jan./mar. 2015. Disponível em:https://doi.org/10.1590/1983-1447.2015.01.43623. Acesso em: 25 abr. 2022.
  » https://doi.org/10.1590/1983-1447.2015.01.43623
• EVANGELHO, Victor Gustavo Oliveira; COSTA, Fabrício da Mota Ramalho; CASTRO, Helena Carla; BELLO, Murilo Lamim; AMORIM, Márcia Rodrigues. Autismo no Brasil: uma revisão sobre estudos em neurogenética. Revista Neurociências, Rio de Janeiro, n. 29, p. 1-20, 2021. Disponível em:https://doi.org/10.34024/rnc.2021.v29.12440. Acesso em: 25 abr. 2022.
  » https://doi.org/10.34024/rnc.2021.v29.12440
• FARIAS, Iara Maria de; MARANHÃO, Renata Veloso de Albuquerque; CUNHA, Ana Cristina Barros da. Interação professor-aluno com autismo no contexto da educação inclusiva: análise do padrão de mediação do professor. Revista Brasileira de Educação Especial, Bauru, v. 14, n. 3, p. 365-384, dez. 2008. Disponível em:https://doi.org/10.1590/S1413-65382008000300004. Acesso em: 25 abr. 2022.
  » https://doi.org/10.1590/S1413-65382008000300004
• FEUERSTEIN, Reuven; FEUERSTEIN, Refael S. Mediated Learning Experience: a theoretical review. In: FEUERSTEIN, Reuven; KLEIN, Pnina S.; TANNENBAUM, Abraham J. Mediated Learning Experience (MLE): theoretical, psychosocial and learning implications. London: International Center for Enhancement of Learning Potential, 1991. p. 3-51.
• FREITAS, Maria Teresa de Assunção. A abordagem sócio-histórica como orientadora da pesquisa qualitativa. Cadernos de Pesquisa, São Paulo, n. 116, p. 21-39, jul. 2002. Disponível em:https://doi.org/10.1590/S0100-15742002000200002. Acesso em: 30 abr. 2022.
  » https://doi.org/10.1590/S0100-15742002000200002
• INSTITUTO NACIONAL DE ESTUDOS E PESQUISAS EDUCACIONAIS ANÍSIO TEIXEIRA. Sinopse Estatística da Educação Superior 2017 - Graduação. INEP, Brasília, 2018. Disponível em: https://www.gov.br/inep/pt-br/acesso-a-informacao/dados-abertos/sinopses-estatisticas/educacao-superior-graduacao Acesso em: 13 maio 2022.
  » https://www.gov.br/inep/pt-br/acesso-a-informacao/dados-abertos/sinopses-estatisticas/educacao-superior-graduacao
• JERUSALINSKY, Alfredo. Psicanálise e desenvolvimento infantil 4. ed. Porto Alegre: Artes e Ofícios, 2007.
• KANNER, Leo. Autistic disturbances of affective contact. The Nervous Child: quarterly journal of psychopathology, psychotherapy, mental hygiene and guidance of the child, New York, v. 2, n. 1, p. 217-250, 1943. Disponível em:https://neurodiversity.com/library_kanner_1943.pdf. Acesso em: 30 abr. 2022.
• LEMOS, Emellyne Lima de Medeiros Dias; NUNES, Laísy de Lima; SALOMÃO, Nádia Maria Ribeiro. Transtorno do Espectro Autista e Interações Escolares: sala de aula e pátio. Revista Brasileira de Educação Especial, Bauru, v. 26, n. 1, p. 69-84, jan./mar. 2020. Disponível em:https://doi.org/10.1590/s1413-65382620000100005. Acesso em: 13 maio 2022.
  » https://doi.org/10.1590/s1413-65382620000100005
• LEMOS, Emellyne Lima de Medeiros Dias; SALOMÃO, Nádia Maria Ribeiro; AQUINO, Fabíola de Sousa Braz; RAMOS, Cibele Shirley Agripino. Concepções de pais e professores sobre a inclusão de crianças autistas. Fractal: Revista de Psicologia, v. 28, n. 3, p. 351-361, set./dez. 2016. Disponível em:https://doi.org/10.1590/1984-0292/1229. Acesso em: 30 abr. 2022.
  » https://doi.org/10.1590/1984-0292/1229
• LOPES, Caroline Oliveira. Transtorno do Espectro Autista: um estudo bibliográfico sobre a evolução do conceito e as estratégias de inclusão propostas no período de 1996 a 2020. 2021. Monografia (Graduação em Pedagogia) - Faculdade de Educação. Rio de Janeiro: Universidade Federal do Rio de Janeiro, 2021.
• MENDES, Karina Dal Sasso; SILVEIRA, Renata Cristina de Campos Pereira; GALVÃO, Cristina Maria. Revisão integrativa: método de pesquisa para a incorporação de evidências na saúde e na enfermagem. Texto e Contexto - Enfermagem, Florianópolis, v. 17, n. 4, p. 758-764, out./dez. 2008. Disponível em:https://doi.org/10.1590/S0104-07072008000400018. Acesso em: 25 abr. 2022.
  » https://doi.org/10.1590/S0104-07072008000400018
• MORIN, Edgar. Os sete saberes necessários à educação do futuro 2. ed. São Paulo: Cortez; Brasília: Unesco, 2000.
• NUNES, Fernanda; ORTEGA, Francisco. Ativismo político de pais de autistas no Rio de Janeiro: reflexões sobre o “direito ao tratamento”. Saúde e Sociedade, São Paulo, v. 25, n. 4, p. 964-975, out./dez. 2016. Disponível em:https://doi.org/10.1590/S0104-12902016163127. Acesso em: 25 abr. 2022.
  » https://doi.org/10.1590/S0104-12902016163127
• OLIVATI, Ana Gabriela; LEITE, Lucia Pereira. Experiências acadêmicas de estudantes universitários com transtornos do espectro autista: uma análise interpretativa dos relatos. Revista Brasileira de Educação Especial, Bauru, v. 25, n. 4, p. 729-746, out./dez. 2019. Disponível em:https://doi.org/10.1590/s1413-65382519000400012. Acesso em: 25 abr. 2022.
  » https://doi.org/10.1590/s1413-65382519000400012
• OLIVEIRA, Zilma de Moraes Ramos de. Jogo de papéis: uma perspectiva de análise do desenvolvimento humano. 1988. Tese (Doutorado em Psicologia) - Instituto de Psicologia. São Paulo: Universidade de São Paulo, 1988.
• OLIVEIRA, Zilma de Moraes Ramos de. Práticas discursivas nas interações de crianças pequenas: algumas questões metodológicas e conceituais. Cadernos de Psicologia, Ribeirão Preto, v. 2, n. 1, p. 55-60, 1996. Disponível em: Disponível em: https://www.cadernosdepsicologia.org.br/index.php/cadernos/article/view/12/14 Acesso em: 30 abr. 2022.
  » https://www.cadernosdepsicologia.org.br/index.php/cadernos/article/view/12/14
• OLIVEIRA, Zilma de Moraes Ramos de; ROSSETTI-FERREIRA, Maria Clotilde. O valor da interação criança-criança em creches no desenvolvimento infantil. Cadernos de Pesquisa, São Paulo, v. 87, p. 62-70, nov. 1993. Disponível em: Disponível em: http://publicacoes.fcc.org.br/index.php/cp/article/view/928/933 Acesso em: 30 abr. 2022.
  » http://publicacoes.fcc.org.br/index.php/cp/article/view/928/933
• ONU - ORGANIZAÇÃO DAS NAÇÕES UNIDAS. Assembleia Geral. Convenção sobre os Direitos das Pessoas com Deficiência e Protocolo Facultativo Nova York: ONU, 2006. Disponível em: Disponível em: https://www.unicef.org/brazil/convencao-sobre-os-direitos-das-pessoas-com-deficiencia Acesso em: 30 abr. 2022.
  » https://www.unicef.org/brazil/convencao-sobre-os-direitos-das-pessoas-com-deficiencia
• PINAZZA, Mônica Appezzato; FOCHI, Paulo Sérgio. Desenvolvimento de profissionais da educação infantil: a perspectiva ecológica da formação em contexto. Cadernos de Pesquisa em Educação, Vitória, ano 15, v. 20, n. 47, p. 68-89, jan./jul. 2018. Disponível em:https://doi.org/10.22535/cpe.v0i47.21332. Acesso em: 30 abr. 2022.
  » https://doi.org/10.22535/cpe.v0i47.21332
• PINTO, Rayssa Naftaly Muniz; TORQUATO, Isolda Maria Barros; REICHERT, Altamira Pereira da Silva; SOUZA NETO, Vinicius Lino de; SARAIVA, Alynne Mendonça. Autismo infantil: impacto do diagnóstico e repercussões nas relações familiares. Revista Gaúcha de Enfermagem, Porto Alegre, v. 37, n. 3, p. 1-9, 2016. Disponível em:https://doi.org/10.1590/1983-1447.2016.03.61572. Acesso em: 30 abr. 2022.
  » https://doi.org/10.1590/1983-1447.2016.03.61572
• REGO, Teresa Cristina. Vygotsky: uma perspectiva histórico-cultural da educação. 7. ed. Petrópolis: Vozes, 1999.
• ROSSETTI-FERREIRA, Maria Clotilde; AMORIM, Katia S.; SILVA, Ana Paula S. Uma perspectiva teórico-metodológica para análise do desenvolvimento humano e do processo de investigação. Psicologia: Reflexão e Crítica, Porto Alegre, v. 13, n. 2, p. 281-293, 2000. Disponível em:https://doi.org/10.1590/S0102-79722000000200008. Acesso em: 30 abr. 2022.
  » https://doi.org/10.1590/S0102-79722000000200008
• SANTIAGO, Mylene Cristina; SANTOS, Mônica Pereira dos; MELO, Sandra Cordeiro de. Inclusão em educação: processos de avaliação em questão. Ensaio: Avaliação e Políticas Públicas em Educação, Rio de Janeiro, v. 25, n. 96, p. 632-651, jul./set. 2017. Disponível em:https://doi.org/10.1590/s0104-40362017002500652. Acesso em: 30 abr. 2022.
  » https://doi.org/10.1590/s0104-40362017002500652
• SEGEREN, Letícia; FRANÇOZO, Maria de Fátima de Campos. As vivências de mães de jovens autistas. Psicologia em Estudo, Maringá, v. 19, n. 1, p. 39-46, jan./mar. 2014. Disponível em:https://doi.org/10.1590/1413-7372189590004. Acesso em: 30 abr. 2022.
  » https://doi.org/10.1590/1413-7372189590004
• SEMENSATO, Márcia Rejane; BOSA, Cleonice Alves. Crenças Indicativas de Resiliência Parental no Contexto do Autismo. Psicologia: Teoria e Pesquisa, Brasília, v. 33, p. 1-10, 2017. Disponível em:https://doi.org/10.1590/0102.3772e33416. Acesso em: 30 abr. 2022.
  » https://doi.org/10.1590/0102.3772e33416
• SENNA, Maria Teresa Telles Ribeiro. Pesquisa em educação infantil: o paradigma sistêmico de Urie Bronfenbrenner. Curitiba: CRV, 2011.
• SMEHA, Luciane Najar; CEZAR, Pâmela Kurtz. A Vivência da Maternidade de Mães de Crianças com Autismo. Psicologia em Estudo, Maringá, v. 16, n. 1, p. 43-50, jan./mar. 2011. Disponível em: Disponível em: https://www.scielo.br/j/pe/a/QypM8WrpBcGX9LnwfvgqWpK/abstract/?lang=pt Acesso em: 30 abr. 2022.
  » https://www.scielo.br/j/pe/a/QypM8WrpBcGX9LnwfvgqWpK/abstract/?lang=pt
• SMOLKA, Ana Luiza B.; GÓES, Maria Cecília R. (Orgs.) A linguagem e o outro no espaço escolar: Vygotsky e a construção do conhecimento. Campinas: Papirus, 1993.
• SOUZA, Marcela Tavares de; SILVA, Michelly Dias da; CARVALHO, Rachel de. Integrative review: what is it? How to do it?. Revista Einstein, São Paulo, v. 8, n. 1, p. 102-106, jan./mar. 2010. Disponível em:https://doi.org/10.1590/S1679-45082010RW1134. Acesso em: 30 abr. 2022.
  » https://doi.org/10.1590/S1679-45082010RW1134
• VYGOTSKY, Lev Semionovitch. A formação social da mente 6. ed. São Paulo: Martins Fontes, 2003.

• 2
  These dimensions are explored in detail in Bronfenbrenner (1996) and Senna (2011).
• 3
  Our option to use the word development in the plural is in tune with the assumptions of Morin (2000), especially when he discusses about unitas multiplex, referring to what he considers preponderant to the education of the future, dealing with the dimensions of unity and human diversity. According to Morin (2000, p. 55), "[...] it is essential to take care that the idea of the unity of the human species does not erase the idea of diversity, and that its diversity does not erase the idea of unity", that is, we reiterate with the word "developments" what Morin (2000) refers to when he talks about the importance of conceiving the unity of the multiple and the multiplicity of the one.
• 4
  Psychosocial Care Network.
• 5
  Unified Health System (SUS).
• 6
  Psychosocial Care Center.
• 7
  Center for Child and Youth Psychosocial Care.
• 8
  We understand social support as that resulting from the diagnosis related to the ICD (F84), since it gives the families the opportunity to apply for benefits such as the one foreseen in the Organic Law of Social Assistance (LOAS), and even subsidies for the purchase of cars, among others that go beyond the financial issue.
• 9
  A multidisciplinary approach that opposes the biomedical one and understands the biological, psychological, and social dimensions of an individual, considering his or her environment and social relations.
• 10
  Defined as: "[...] an organized space with computer equipment, technical aids, pedagogical materials and adapted furniture, to meet the special educational needs of the students" (BRASIL, 2007, p. 1), and was established by Normative Ordinance No. 13, April 24, 2007, whose goal is to support public education systems and organize the Specialized Educational Attendance.

• 1
  This article has some limitations in the scope of the various research sources available, since no articles published in event proceedings or other international databases were searched.

Publication Dates

• Publication in this collection
  31 July 2023
• Date of issue
  2023

History

• Received
  25 May 2022
• Accepted
  03 Jan 2023

• This document has a preprint version
  https://preprints.scielo.org/index.php/scielo/preprint/view/4154