Care for autistic people in Primary Health Care: systematic review O Cuidado à pessoa autista na Atenção Primária à Saúde: revisão - Brazilian ...
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Brazilian Journal of Development 11391
ISSN: 2525-8761
Care for autistic people in Primary Health Care: systematic review
O Cuidado à pessoa autista na Atenção Primária à Saúde: revisão
sistemática
DOI:10.34117/bjdv7n1-777
Recebimento dos originais: 29/12/2020
Aceitação para publicação: 29/01/2021
Verônica Ribeiro Possamai
Mestre em Bioética, Ética Aplicada e Saúde Coletiva - PPGBIOS/UFRJ; Doutoranda
em Bioética, Ética Aplicada e Saúde Coletiva - PPGBIOS/UFRJ
Instituição de atuação atual: Universidade Federal do Rio de Janeiro
Endereço: PPGBIOS/UFRJ: Rua Venceslau Brás, 71 - Campus Praia Vermelha -
Botafogo
Rio de Janeiro - RJ. Cep: 22290-140
E-mail: vrpossamai.fono@gmail.com
ABSTRACT
Autism Spectrum Disorder is a mental disorder that appears in the period of development.
(APA, 2013) The objective of this article is to present the fields of action with autistic
users in the Unified Health System (SUS), analyze the existing conflicts and propose an
articulation between the fields through Primary Health Care (PHC). The systematic
review PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyzes)
was used to survey and select the bibliographic material. There are two fields of action
with autistic users in SUS: (1) The Psychosocial Care Network and (2) Rehabilitation.
These fields present some conflicts related to your beliefs about the topic. After the
exposed conflict, it was possible to understand Primary Health Care as an articulating
point of the two fields, respecting the uniqueness of each subject and carrying out the
necessary referral for habilitation / rehabilitation and / or the field of psychosocial care.
This study presented and analyzed one of the several bioethical conflicts in the field of
ASD, requiring further studies on the subject.
Keywords: Autism, Autistic Spectrum Disorder, Bioethics, Psychosocial Care,
Rehabilitation.
RESUMO
O Transtorno do Espectro do Autismo é um transtorno mental que aparece no período de
desenvolvimento. (APA, 2013) O objetivo do presente artigo é apresentar os campos de
atuação com os usuários autistas no Sistema Único de Saúde (SUS), analisar os conflitos
existentes e propor uma articulação entre os campos através da Atenção Primária à Saúde
(APS). Foi utilizada a revisão sistemática PRISMA (Preferred Reporting Items for
Systematic Reviews and Meta-Analyses) para levantamento e seleção do material
bibliográfico. Existem dois campos de atuação com os usuários autistas no SUS: (1) A
Rede de Atenção Psicossocial e (2) a Reabilitação. Estes campos apresentam alguns
conflitos relacionados às suas convicções acerca do tema. Após o conflito exposto, foi
possível compreender a Atenção Primária à Saúde como ponto articulador dos dois
campos, respeitando a singularidade de cada sujeito e realizando o encaminhamento
necessário para a habilitação/reabilitação e/ou o campo da atenção psicossocial. Este
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estudo apresentou e analisou um dos diversos conflitos bioéticos existentes no campo do
TEA, sendo necessária a realização de mais estudos sobre o tema.
Palavras-chave: Autismo, Transtorno do Espectro Autista, Bioética, Atenção
Psicossocial, Reabilitação.
1 INTRODUCTION
Autistic Spectrum Disorder (ASD) is defined as a mental illness, which presents
linguistic impairments, in addition restricted and repetitive interests and behaviors. The
first symptoms appear in the development period and, in more severe cases, they can
appear in the first year of life (APA, 2013). Autistic individuals have many difficulties –
for example, social interaction and communication – and need professional monitoring.
The number of diagnoses has been growing every year, worrying professionals
(FONTENELE; LOURINHO, 2020); In fact, according to data from the ADDM (Autism
and Developmental Disabilities Monitoring), in the 2000s, the prevalence was 1/150
children in the USA in children aged eight, increasing to 1/54 in 2016 (MAENNER, 2020;
POSSAMAI, 2020).
Currently, to diagnose ASD, the following are used: Diagnostic and statistical
manual of mental disorders (DSM-V), from the American Psychiatric Association (APA),
2013 and the International Classification of Diseases (ICD - 10), from the World Health
Organization (WHO) (FREITAS, 2019).
At ICD-10, childhood autism is included in one of the global developmental
disorders (TGD). The following are part of the TGD: childhood autism; atypical autism;
Rett's syndrome; another childhood disintegrative disorder; hyperkinesia disorder
associated with mental retardation and stereotyped movements; Asperger's syndrome;
other global developmental disorders; and unspecified global developmental disorders. In
June 2018, WHO launched ICD - 11. In this edition, autism is associated with intellectual
disability and impaired functional language. Thus, the classification becomes more
consistent with the DSM-V, including the TGD (including Asperger and Rett syndromes)
within the ASD category (APA, 2013; WHO, 2003, 2018). The Diagnostic and Statistical
Manual of Mental Disorders (DSM) was developed by the American Psychiatric
Association (APA) and has been released in five editions. Autism was first cited in the
third edition, and is currently defined as Autism Spectrum Disorder in DSM-V. (RAPIN;
TUCHMAN, 2009). The severity level is classified according to the level of support
needed, generating 3 levels: level 1 which corresponds to the autistic person who needs
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support, level 2 which corresponds to the autistic person who needs substantial support,
and level 3 which corresponds to the autistic person who needs very substantial support
(APA, 2014).
The lack of knowledge about the disorder causes the late identification of risk
signs for autism, and, as a consequence, the late diagnosis and intervention (SURMEN et
al, 2015; TIMLIN et al, 2015; VASCONCELLOS). In this way, the child can lose years
of possible interventions, which could reduce the functional losses caused by the disorder
(BRASIL, 2014; WU, 2020). After identifying the signs, they must be referred for
multiprofessional evaluation and therapeutic intervention. This can be done from two
fields: rehabilitation and psychosocial care. Both spheres provide multidisciplinary care
to children with autism, but end up in conflict in relation to the knowledge of the disorder
(OLIVEIRA et al, 2017).
Children with autism need a therapeutic intervention carried out by a
multidisciplinary team. (PONTES et al, 2020) It is essential that the professional team
remains aligned with family´s children for continuity and effectiveness of treatment. The
treatment plan must be individualized so that it respects the uniqueness of each individual.
The Living Without Limit Program: National Plan for the Rights of Persons with
Disabilities was launched in 2011 and, as part of it, the Ministry of Health established the
Health Care Network for Persons with Disabilities (BRASIL, 2012a). In 2012, the
National Policy for the Protection of the Rights of People with Autism Spectrum Disorder
(BRASIL, 2012b) was launched, which considers individuals with autism as people with
disabilities for all legal purposes (BRASIL, 2014).
There are two official documents to guide the care of people with autism:
'Guidelines for Attention to the Rehabilitation of People with Autism Spectrum Disorder
(ASD)' and 'Line of Care for Attention to People with Autism Spectrum Disorders and
their families in the psychosocial care network of the Unified Health System'. The first
includes TEA in the group of disabilities and advocates intervention through
rehabilitation, the second addresses it as a mental disorder and believes in intervention
through psychosocial care (FURTADO, 2019; OLIVEIRA, et al, 2017; SILVA). These
disagreements generate conflicts that focus around a claim about which of the two groups
would have more knowledge and legitimacy about autism, and thus, consequently, the
main authors of public policies (OLIVEIRA et al, 2017). This article aims to present the
approach in each of the two spheres and propose a way to try to reduce the conflict
between them.
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The objective of this article is to present the fields of action with autistic users in
the Unified Health System (SUS – Sistema Único de Saúde, in portuguese), analyze the
conflicts between them and propose an articulation between the fields through Primary
Health Care (PHC).
2 METHODOLOGY
Systematic reviews aim to identify, select and critically evaluate relevant research.
Thus, in this study, we opted to use the review by the PRISMA method. The elaboration
of this review was carried out in October 2020, where we carried out the survey of
documents indexed in the PubMed, Web of Science and VHL (Virtual Health Library)
databases. The descriptors used were based on the structured DeCS / Mesh vocabulary:
(i) Autism Spectrum Disorder, (ii) Autistic Disorder, (iii) Unified Health System, (iv)
Primary Health Care, (v) Mental Health Services and (vi) Rehabilitation. Articles
published in the last 10 years (2010 - 2020) were selected in order to obtain current data
and information. The documents were found using the following search strategy:
("Autism Spectrum Disorder" OR "Autistic Disorder") and ("Unified Health System" OR
"Primary Health Care" OR "Mental Health Services") and "Rehabilitation”. To verify the
duplicate material, the Mendeley ® reference organizer was used, the selection was made
according to the following flowchart and based on the systematic review Prisma.
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FIGURE 1 - Flow of articles selection in Prisma Systematic Review.
Web of
BVS PubMed
Science
Identification
n: 45 n: 32 n: 183
Filter: “Public Health”
n: 77
Selection
n: 154
Eligibility
Duplication
withdrawal
n: 128
Title’s relevance Withdrawn articles:
n: 50 n: 78
Inclusion
Abstract’s relevance Withdrawn articles:
n: 28 n: 22
Source: Organized by the author
As shown in the previous figure, after searching the databases, 154 articles were
found, excluding duplicate articles, 128 were obtained. After excluding articles from the
compatibility of the title and abstract (abstract), the search ended with 28 scientific
articles. To complement the study, official documents from the Ministry of Health were
used, as well as laws and ordinances consistent with the proposed theme.
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3 RESULTS AND DISCUSSION
3.1 HEALTH CARE NETWORKS
Before presenting the two fields of action with autists, psychosocial care and
rehabilitation, it is necessary to understand the functioning of Health Care Networks
(HCN), which are part of a recent proposal, which has been originated in the USA, in the
1990s. After its emergence, it was incorporated by the public health systems of Western
Europe and Canada and, later, by some countries still in development (MENDES, 2011).
The HCN can be articulated with the health territories (MENDES, 2011), which
consist of “a geographical area that comprises a population with epidemiological and
social characteristics and with their needs and health resources to serve them”
(ALMEIDA, et al 1998, p. 21). In fact, the levels of health care are classified through the
unique technological densities and cover (1) the lowest density - Primary Health Care,
(2) the intermediate density - Secondary Health Care and (3) the higher technological
density - Tertiary Health Care. These levels are classified by technological density and
are not related to complexities, since Primary Health Care can have cases of high
complexity and Tertiary Health Care of low complexity. In order to constitute the HCN,
the levels of care must be combined with the health territories (MENDES, 2011).
In the Unified Health System (SUS – Sistema Único e Saúde, in portuguese) there
are two official milestones for the HCN: Ordinance No. 4,279, of December 30, 2010,
which establishes guidelines for the organization of health care networks within the scope
of SUS and Decree No. 7,508, of June 28, 2011, which defines the HCN as a way of
organizing health promotion, prevention and recovery actions and services integrated
through technical, logistical and management support systems in order to ensure
comprehensive care (DAMASCENO et al. 2020). Furthermore, according to Mendes
(2011), network proposals have been adopted since the 1990s to replace the bureaucratic,
hierarchical and hegemonic model of levels of care characterized by pyramids.
“Rigid hierarchical organizations characterized by hierarchical pyramids and a
mode of production dictated by the principles of Taylorism and Fordism tend
to be replaced by networks structured in flexible and open structures of sharing
and interdependencies in objectives, information, commitments and results”
(MENDES, 2011, p. 79).
In the HCN, polyarchy arises to replace the concept of hierarchy, with the system
being organized horizontally (DAMASCENO et al, 2020). Thus, the points of attention
are not organized in the form of a hierarchical pyramid, but in the form of a horizontal
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network, classifying them by technological densities without order and degree of
importance among them (OLIVEIRA et al., 2004; BERMUDEZ; SIQUEIRA-BATISTA,
2017).
In hierarchical organizations, there is a risk of “bottlenecks”, due to the
hierarchical flows from a smaller center to its superior, without other alternative paths,
preventing the accessibility of population to the highest levels of the hierarchy. Polyarchic
networks (or mesh networks) allow each node to connect to the others through different
paths, allowing population to access the different points (MENDES, 2011).
Primary Health Care (PHC) is the preferred gateway for SUS (OLIVEIRA et al,
2020). The care offered at this level of care encompasses actions that can acquire marked
complexity, individually and collectively, and which concern prevention and health
promotion, care related to habits changes, behaviors and lifestyle, in addition to offer
treatment , diagnosis, rehabilitation and harm reduction, aiming at the comprehensive care
of the user. (RAIMUNDO; SILVA, 2020). The levels of secondary and tertiary care are
made up of greater technological density, not greater complexity. The misconception that
PHC is less complex causes managers, politicians, health professionals and the population
to give less value to this level of care, with a certain trivialization / disregard (less value)
of their performance (MENDES, 2011). For this reason, the network modelo f care, in a
polyarchic form, contrasting the care levels model that makes up the hierarchical pyramid,
becomes so important. As you can see in the following figure.
Fig. 2..The shift from pyramidal and hierarchical systems to health care networks
High
complexity
Medium PHC
complexity
Basic
care
Source: MENDES (2011)
As shown in figure 1 – and explained earlier – the pyramidal model hierarchizes
several levels of care and maintains a unidirectional path, with accessibility problems to
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the entire population. According the network model, the points of attention connect
horizontally, with multidirectional paths, with PHC articulating this access.
The RAS are constituted (1) by the population, (2) by an operational structure and
(3) by a health care model. The population is a constituent of health territories, which are
the responsibility of the SAN. It is organized into families and is registered and registered
in subpopulations due to social and health risks (MENDES, 2011).
“The knowledge of the population of an RAS involves a complex process,
structured in several moments: the process of territorialization; the registration
of families; the classification of families by socio-health risks; linking families
to the PHC Unit / Family Health Program Team; the identification of
subpopulations with risk factors; the identification of subpopulations with
health conditions stratified by degrees of risk; and the identification of
subpopulations with very complex health conditions” (MENDES, 2011, p. 85).
As previously mentioned, in care network model, PHC is responsible for
articulating with the population so that care with accessibility and quality is possible
(MENDES, 2011; DAMASCENO et al, 2020). The operational structure is constituted
by the points of the networks and by the material and immaterial connections that
communicate these different points. These points are: (i) the communication center, APS;
(ii) secondary and tertiary points of care; (iii) support systems; and (iv) the logistical
systems and the governance system of the healthcare network (DAMASCENO et al,
2020).
3.2 AUTISTIC SPECTRUM DISORDER IN THE PSYCHOSOCIAL CARE
NETWORK
The Psychosocial Care Network (PCN) makes up the SUS (Sistema único de
Saúde, in portuguese) and follows its principles and guidelines. This field of action is
guided by the Psychiatric Reform movement, which took place in Brazil in the late 1980s
and consists of a political and social movement affecting several territories: public
sectors, universities, professional councils, associations of people with mental disorders
and family members, social movements and public opinion (AMARANTE; TORRE,
2001; BRASIL, 2015; DE MARCHI; JUNIOR; NUNES, 2020). The struggle for reform
resulted in the National Mental Health Policy, which aims to consolidate the field of
psychosocial care in SUS (BRAGA; OLIVEIRA, 2019). Law 10.216, of April 6, 2001,
guarantees the protection and rights of people with mental disorders and redirects the care
model in mental health; it also highlights the need for a specific planned discharge policy
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and psychosocial rehabilitation for people with long-term psychiatric hospitals (BRASIL,
2001). With the validity of this legal framework, there was a great advance in the creation
of a network of community and territorial mental health services. The Psychosocial Care
Centers (CAPS) should be highlighted – which will be explained below – and their
importance in this advance (BRASIL, 2015).
In PCN, the object of attention is not the disease and / or the symptoms, as in the
psychiatric model (before the reform), but the subject and his psychic suffering. In this
way, the network proposes new modalities of care and a paradigm shift, outlining
innovative forms of intervention (BRAGA; OLIVEIRA, 2019). Many changes were
achieved through social movements, with emphasis on the anti-asylum struggle, which
appears as a result of the violence that exists in psychiatric hospitals. This violence was
portrayed in the 2001 film “Bicho de Sete Cabeças”, which is about a teenager who was
admitted to a psychiatric hospital due to drug use. The book “Holocausto Brasileiro” also
reports the precarious conditions and mistreatment experienced by patients hospitalized
in psychiatric hospitals, as it emerged from the reports of employees of the extinct
Hospital Colônia de Barbacena (ARBEX, 2013). Mental health workers mobilized and
began to demand changes from government towards patients with mental disorders. In
1987, at the II National Congress of Mental Health Workers, in Bauru, state of São Paulo,
the motto “For a society without asylums” was adopted. As a result of this event, the
movement intensified, with the participation of users of mental health services and their
families, which allowed a new role for SUS users in terms of social participation
(BRAGA; OLIVEIRA, 2019).
Psychiatric reform, according to Braga and Oliveira (2019), has been based on the
perspective of deinstitutionalization and consists of a complex and alive path. This
movement seeks to change the perspective of the relationship of psychological distress
and social relationships, reinforcing the role of this population and respecting their
knowledge, fighting for creation of public policies and legal foundations to support this
project (BRAGA; OLIVEIRA, 2019). At PCN, for the monitoring of users, teams or
reference professionals are selected for each case, with the objective of strengthening ties
with the family. This choice of the reference team / technician is often made by the user
or family and this decision must be accepted. This professional / team will perform
continuous care and articulation of the family with other professionals (BRASIL, 2015).
The Singular Therapeutic Project (STP) is a plan of care, built by professionals or
reference teams, with families and users, based on identification of needs of each subject,
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encompassing different dimensions and valuing the real context of their lives (VALERIO
et al, 2020). Thus, it reduces the chances of the team being captured by more apparent
demands and giving less visibility to those who demand little due to the fast pace of health
systems (BRASIL, 2015).
In relation to monitoring, it is necessary to the team to try to understand the subject
and his way of functioning, of his dynamic life, in his territory and his real contexts, as
previously mentioned. Thus, an STP can be developed respecting the individuality and
the needs of each subject. It is important to note that there is no single approach capable
of effectively assisting all people with autism, which is why individualized
multiprofessional assessment is so important (BRASIL, 2015).
“There is no single approach to be privileged in care for people with autism
spectrum disorders. It is recommended that the choice between the various
existing approaches consider its effectiveness and safety and be taken
according to the uniqueness of each case ”(BRASIL, 2015, p. 80).
It should be noted that Ordinance 336/0219 thant played an extreme important
role in transforming care for children and adolescents with psychological distress, as it
made it possible to finance the construction of Psychosocial Care Centers (PCCs) in the
country. Thus, it allows the expansion of the Psychosocial Care Network (BRASIL, 2002;
BRAGA; OLIVEIRA, 2019). PCCs have been constituted as essential units for the care
of the population with mental disorders, including people with autism. These centers were
the first services created after the National Mental Health Policy, in the 1990s. These
services maintain the 'open doors' policy, that is, they do not have an appointment, waiting
list or referral requirements. PCC offer care to people with mental disorders,
psychological distress, alcohol and drug users and / or ambience in an intersectoral and
territorial way. In addition to the aforementioned users, these centers are places of
reference for the care of subjects with ASD, working with the philosophy of care intensity
– as opposed to the processes of restricting freedom – following the thought of the anti-
asylum struggle (BRASIL, 2015):
“At PCC and in the territory, there are: (a) individual or group consultations;
(b) community and psychosocial rehabilitation activities; (c) attention to
family members; (d) home care; (e) meetings or assemblies for the
development of citizenship; (f) drug treatment; and (g) intense mediations
between users, their families and the community. (...) Thus, according to
Ordinance No. 3,088 / 2011, these services are differentiated as: PCC I, PCC
II, PCC III, PCC i, PCC ad and PCC ad III. It is worth noting that PCC III
operates 24 hours a day, PCC I do not restrict care by age and PCCi (children
and adolescents) specifically serve children and adolescents. In municipalities
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where there is no PCC i, care for this population in another existing PCC
modality must be guaranteed, respecting the principles and guidelines of the
Statute of the Child and Adolescent (SCA)” (BRASIL, 2015, p. 99 ).
As previously mentioned, PCC are places of psychosocial treatment and
rehabilitation, which carry out work aimed at the inclusion of the individual in society,
respecting their limits and potential as a subject. Unlike this view, the other sphere that is
responsible for caring for the autistic person in SUS is Rehabilitation, which aims at the
physical and intellectual development of people with disabilities in Specialized
Rehabilitation Centers (SRC). This sphere will be addressed below.
3.3 AUTISTIC SPECTRUM DISORDER IN REHABILITATION
In the previous topic, the Psychosocial Care Network (PCN) was presented, which
is one of the spheres cares for the autistic person in SUS. The other sphere is
Rehabilitation, which takes care of autistic people through the Care Network for People
with Disabilities. The main care places are at the Specialized Rehabilitation Centers
(SRC) (ROCHA et al, 2019).
The field of rehabilitation of autism, as previously mentioned, considers the
disorder as a disability and has as an official document for the guidance of professionals
The Guidelines for Attention to the Rehabilitation of People with Autism Spectrum
Disorder. This document presents from the indicative signs of autism, general
characteristics, screening instruments, diagnostic evaluation and classifications, causes
and comorbidities, PTS, guidelines regarding care in the SUS and care for the family
(moment of news of the diagnosis, support and welcoming) (BRASIL, 2014):
“The objective of the evaluation is not only to establish the diagnosis by itself,
but to identify the potential of the person and family. This can be achieved by
extracting from the teams what they have observed in their respective fields,
how each area interacts with the other. Considering: (a) that the diagnosis of
ASD involves the identification of “qualitative deviations” in development
(especially in the field of social interaction and language); (b) the need for
differential diagnosis; and (c) the identification of potentialities as well as
commitments, it is important to have a team of at least psychiatrist and / or
neurologist and / or pediatrician, psychologist and speech therapist” (BRASIL,
2014, p. 39).
Despite the need for diagnosis to be made by a multidisciplinary team,
communication with family must be conducted by a professional in the team who has
established a greater bond (WESTPHAL, 2019). This professional may be the reference
to coordinate the patient's therapeutic project (BRASIL, 2014).
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The Viver Sem Limites Plan (in portuguese) was created, included in the
aforementioned policy, the Specialized Rehabilitation Centers (SRC). These centers aim
at physical, auditory, intellectual and / or visual rehabilitation. They are made up of a
multidisciplinary team and vary with the demand of each SRC. (ROCHA et al. 2019)
These health services must operate in a network, articulating with other child treatment
units and making necessary referrals, including in the field of mental health. It is worth
emphasizing the importance of articulating care with the individual's daily life as
education, leisure, culture and social protection, developing patient autonomy (BRASIL,
2014).
According to Carvalho (2019), the minimum multidisciplinary team that must
compose the Specialized Rehabilitation Centers must be composed of a doctor, a
physiotherapist, a speech therapist, na occupational therapist, a social worker and a nurse
(CARVALHO, 2019). In the Guidelines document, the following are presented as
Specialized Health Care services: the (1) Specialized Rehabilitation Centers (SRC), (2)
Intellectual Rehabilitation Services and Autism, (3) Psychosocial Care Centers (PCC) and
(4) Others institutes, clinics and specialties (BRAZIL, 2014).
3.4 CONFLICT BETWEEN THE TWO FIELDS: PSYCHOSOCIAL ATTENTION
AND REHABILITATION
When considering autistic care, some authors (ARAÚJO, 2019; OLIVEIRA et al,
2017; SILVA; FURTADO, 2019) highlight the existence of tensions between the spheres
of psychosocial care and rehabilitation, in Brazil and in the world. Thus, according to
Ortega (2009), English-speaking countries have a disagreement between pro-cure groups,
who believe that autism is a disease and should be treated, and anti-cure groups, who
believe that autistic people should be representative and that their features are not
pathological. There are also conflicts about the best therapeutic approach, especially
between professionals who follow the cognitive-behavioral current and those who work
within the scope of psychoanalysis (ARAUJO et al, 2013; LAURENT, 2014; ORTEGA,
2009).
Within the scope of (1) Psychosocial Care, autism is considered a mental disorder,
observing the 'Care lines for care for people with autism spectrum disorders and their
families in the psychosocial care network in the Unified Health System. Health ', 2015;
in the sphere of (2) Rehabilitation, the autistic subject is recognized as a person with a
disability, following the ‘Guidelines for Attention to the Rehabilitation of the Person with
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Autism Spectrum Disorder (ASD)’. Both documents are from the Ministry of Health and
these fields conflict with the best approach to the population with autism (BRASIL, 2014;
BRASIL, 2015; OLIVEIRA et al, 2017).
Some authors have analyzed the official documents of the Ministry of Health
(ARAÚJO, 2019; OLIVEIRA, 2017; SILVA, FURTADO, 2019). According to Oliveira
(2017), the Care Lines have presented more varieties of institutional representatives, as it
included technical areas from the Ministry of Health. The author also points out that this
document has undergone public consultation, with greater credibility due to changes
made in the process of its creation for greater adequacy to the public, different from the
Guidelines that did not go through this public consultancy process (OLIVEIRA et al,
2017).
In relation to diagnosis, the Guidelines present the behavioral and risk indicators
for ASD, demonstrating the importance of the document for diagnostic investigation.
However, the Care Line includes in this process, not only the indicative signs of ASD,
but also the cultural, ethical and political vectors that must be involved in the
investigation. According to Oliveira et al (2017), the Guidelines present issues such as
the trivialization of psychiatric diagnosis and the reduction of the subject to his diagnosis.
Some ethical and political conflicts related to the diagnosis are also presented, which may
cause stigma or benefits (OLIVEIRA, et al. 2017):
“The two publications converge on: 1) the importance of early detection
measures (linked to the Primary Care Network) and the differential diagnosis;
2) participatory inclusion of family members throughout the diagnostic
process; 3) importance and use of screening instruments such as CRI (Clinical
Risk Indicators for Child Development) and M-Chat (Modified Checklist for
Autism in Toddlers); 4) use of the International Classification of Diseases and
Related Health Problems (CDR-10) and the International Classification of
Functionality, Disability and Health (DH) as a reference for classification
systems; 5) importance of attention to possible clinical comorbidities; 6) work
with multidisciplinary clinical teams, although the Guideline, unlike the Care
Line, presents a systematic description of the function of each professional
during the diagnostic process” (OLIVEIRA et al, 2017, p. 717-718).
Both documents, according to Oliveira et al. (2017), present convergences related to the
need to stimulate autonomy, improve performance in social and daily activities, stimulate
inclusion in the labor market, family participation in the therapeutic process and respect
for the individuality of each individual in their Singular Therapeutic Project (STP).
However, the author questions the eligibility criteria for therapeutic methods that are not
explained in the documents (OLIVEIRA et al, 2017).
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With regard to therapeutic interventions themselves, the Guidelines emphasize the role
of habilitation / rehabilitation in parallel with medical, dental and mental health care.
Stresses the monitoring of PHC and specialized care (SRC - Specialized Rehabilitation
Center, Intellectual Rehabilitation Services and Autism, PCC - Psychosocial Care Center,
among others). On the other hand, the Care Lines propose an “extended care network”,
not only using the health devices of the care networks, but also Education and Social
Assistance (OLIVEIRA et al, 2017). A summary of the divergences in the documents –
according to the reading by Oliveira et al. (2017) – is shown in Chart 1.
CHART 1. Summary of divergences between documents
Parameter GUIDELINE CARE LINE
Central Network Care People with disabilities network Psychosocial care network
care
Guidelines Approach Direct and objective approach Broad approach (ethical,
(focus on more technical political, theoretical, clinical,
criteria) among others)
Public consultation No Yes
Rights defense Disability Legislation Mental Health Legislation and
Disability Legislation
Diagnostic guidelines Objective, technical Expanded presentation;
presentation presentation of the cultural,
ethical and political vectors
involved in the process
Care guidelines Emphasis on habilitation and Expansion of the social ties
rehabilitation strategies, aiming possible to each user;
at the development of functional presentation of various clinical
skills techniques and methods
Network organization Predefined flow extended network
Source: Adapted from OLIVEIRA et al. (2017).
When comparing the documents, Oliveira et al (2017) argue that there are no real
points of disagreement, as the texts must have complementarity and not competition.
However, by launching two official documents, the Ministry of Health ended up
contributing to the materialization of the disagreement instead of trying to contemplate
the two fields, as was the intention (OLIVEIRA, 2017). The authors Silva and Furtado
(2019), through the analysis of the documents, defend Psychoanalysis as one of the main
approaches to autistic people. According to them:
“(...) despite the innumerable contributions to the understanding not only of
autism, but of other psychopathologies, Psychoanalysis, in certain situations,
is ruled out by a pseudo-scientific discourse, in which nosological psychiatry
and neurosciences reign with a certain absolutism. This reality points to a
tendency to “biologize” mental disorders” (SILVA, FURTADO, 2019, p.121).
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The authors point out that despite the divergences, both documents agree with the
importance of the STP and emphasize that this point is the alternative to guarantee the
integrality of the SUS, and should contain not only the intra-sectorial strategies, but also
the intersectoral ones (SILVA, FURTADO, 2019). Araújo (2019) questions whether the
specialized care devices are prepared to offer the therapeutic interventions cited as ideal,
such as the ABA (Applied Behavior Analysis). It also questions whether this type of
therapy would be offered at SRC while psychosocial, medication and clinical care
services would be performed at PCC. The author states that for the network to function
properly, it is necessary to clarify the functions of each health service (ARAÚJO, 2019).
As previously presented, Autistic Spectrum Disorder is a complex theme, leading
to some tensions between spheres of care within the Unified Health System. These
tensions can contribute to the greater therapeutic itinerary suffered by family members
until the diagnosis and therapeutic intervention are obtained. In the new model of the
Health Care Network, PHC (Primary Health Care) is the “interchanging node” of points
of care (MENDES, 2011):
“The interpretation of PHC as a strategy for organizing the health care system
implies understanding it as a unique way of appropriating, recombining,
reorganizing and reordering all the resources of the system to satisfy the needs,
demands and representations of the population, which results in its articulation
as a communication center for health care networks ” (MENDES, 2011, p. 96).
The STP one of the points of convergence between the documents, as mentioned,
aims to plan a therapeutic process respecting the individuality of each subject (BRASIL,
2014; BRASIL, 2015), that is, each user needs a differentiated care found in the
qualification / rehabilitation and / or psychosocial care. As Oliveira et al (2017) states,
the two fields must complement each other instead of competing. Therefore, it is
necessary that each case be analyzed individually and considering its social, cultural,
educational, family aspects and the characteristics of the disorder (OLIVEIRA et al,
2017). As mentioned by Mendes (2011), STP has the function of making articulations so
that adequate care is provided to the health user. In this way, it responds as an articulator
of the two fields of action related to ASD based on the evaluation of each user.
(MENDES, 2011). The Family Health Support Center (TFHS) together with the
professionals of the Family Health Strategy (FHS), who are part of the STP (BRASIL,
2014), perform the articulation, support and registration of users to favor the service.
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These centers do not perform outpatient care, but are included in the case discussions to
support diagnostic investigation, joint care and preparation of the STP. (BRASIL, 2015)
Carnut (2017) characterizes the TFHS as:
“(...) way of expanding the concept of integrality in care, through
multiprofessional teams (psychiatrist, homeopath, pediatrician,
physiotherapist, speech therapist, pharmacist, physical educators,
nutritionists, occupational therapists and sanitarians, among others).
Through a matrix work logic, the teams must be of the modality and
have the professional profile according to the epidemiological needs.
These teams aim to guarantee clinical, pedagogical and consultative
support to family health teams whose identified problems go beyond
their specific skills / competences ” (CARNUT, 2017, p. 1180).
TFHS and FHS are PHC programs that are in contact and articulate the fields
mentioned above. Thus, in the face of the exposed conflict, PHC has the function of
guaranteeing comprehensive care, respecting the uniqueness of each subject, directing
them to the points of attention necessary for their demands, including the field of
habilitation / rehabilitation and / or psychosocial care.
4 FINAL CONSIDERATIONS
As previously exposed, Health Care Networks (HCN) are arrangements for
organizing health services and actions of various technological densities that aim to
promote comprehensive and accessible care for SUS users. Primary Health Care (PHC)
is the point of articulation between the rest of the HCN, it is usually the first contact of
the user in the SUS, so it has the responsibility to welcome, guide and articulate health
care for the user among the others attention points.
Autistic Spectrum Disorder is a topic that generates several conflicts from
different perspectives. In this article we discuss the structuring of Health Care Networks,
including Primary Health Care (PHC), as well as the tension between the fields of action
with people with autism (rehabilitation and psychosocial care) and how PHC should act
as an articulator and mediator of the two fields for the benefit of the SUS user. This
conflict is generated by a “competition” based on political and bioethical conceptions.
The main works used in this review do not clearly explain the ethical conflicts that
emerge from care processes for autistic people. This is a point that will need to be
deepened in future studies, in order to guarantee – in fact – comprehensive care to the
user, as recommended in the heart of the SUS.
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REFERENCES
1. Almeida ES, Castro CGJ, Vieira CAL. Distritos sanitários: concepção e
organização. São Paulo (SP): USP; 1998
2. AMARANTE, P.; TORRES, E. H. G. A constituição de novas práticas no campo
da atenção psicossocial: análise de dois projetos pioneiros na Reforma Psiquiátrica no
Brasil. Revista Saúde em Debate, Rio de Janeiro, v. 25, p. 26-34, maio/ago. 2001.
3. APA Manual diagnóstico e estatístico de transtornos mentais: DSM-5 / [American
Psychiatric Association; tradução: Maria Inês Corrêa Nascimento... et al.]; – 5. ed. –
Porto Alegre: Artmed, 2014.
4. ARAUJO, J. A. M. R. Breves Considerações Sobre a Atenção à Pessoa com
Transtorno do Espectro Autista na Rede Pública de Saúde. Revista Psicologia e Saúde, v.
11, n. 1, jan./abr. 2019, p. 89-98
5. ARBEX, D. Holocausto Brasileiro. 1. Ed. – São Paulo: Geração Editorial, 2013.
6. BICHO de Sete Cabeças. Direção de Laís Bodanzky. Brasil: Columbia TriStar
RioFilme. 2001
7. BRAGA, C. P; D’OLIVEIRA, A. F. P. L Políticas públicas na atenção à saúde
mental de crianças e adolescentes: percurso histórico e caminhos de participação. Ciência
& Saúde Coletiva, 24(2):401-410, 2019
8. BRASIL. Lei 10.216, de 6 de abril de 2001. Dispõe sobre a proteção e os direitos
das pessoas portadoras de transtornos mentais e redireciona o modelo assistencial em
saúde mental. Diário Oficial [da] República Federativa do Brasil, Brasília, DF, 2001.
9. _____. Ministério da Saúde. Secretaria de Atenção à Saúde. Departamento de
Ações Programáticas Estratégicas. Diretrizes de Atenção à Reabilitação da Pessoa com
Transtornos do Espectro do Autismo (TEA). / Ministério da Saúde, Secretaria de Atenção
à Saúde, Departamento de Ações Programáticas Estratégicas. – Brasília: Ministério da
Saúde, 2014. 86p.
10. Brasil. Ministério da Saúde. Secretaria de Atenção à Saúde. Departamento de
Atenção Especializada e Temática. Linha de cuidado para a atenção às pessoas com
transtornos do espectro do autismo e suas famílias na Rede de Atenção Psicossocial do
Sistema Único de Saúde / Ministério da Saúde, Secretaria de Atenção à Saúde,
Departamento de Atenção Especializada e Temática. – Brasília: Ministério da Saúde,
2015. 156 p
11. BRASIL. Portaria N° 336, de 19 de fevereiro de 2002. Diário Oficial [da]
República Federativa do Brasil, Brasília, DF, 2002.
12. BRASIL. Portaria 793, de 24 de abril de 2012. Institui a Rede de Cuidados à
Pessoa com Deficiência no âmbito do Sistema Único de Saúde. Diário Oficial [da]
República Federativa do Brasil, Brasília, DF, 2012a.
Brazilian Journal of Development, Curitiba, v.7, n.1, p.11391-11410 Jan. 2021Brazilian Journal of Development 11408
ISSN: 2525-8761
13. BRASIL. Lei 12.764, de 27 de Dezembro de 2012. Institui a Política Nacional de
Proteção dos Direitos da Pessoa com Transtorno do Espectro Autista; e altera o § 3º do
art. 98 da Lei nº 8.112, de 11 de dezembro de 1990. Diário Oficial [da] República
Federativa do Brasil, Brasília, DF, 2012b.
14. BRASIL. Ministério da Saúde. Secretaria de Atenção à Saúde. Departamento de
Ações Programáticas Estratégicas. Diretrizes de Atenção à Reabilitação da Pessoa com
Transtornos do Espectro do Autismo (TEA). / Ministério da Saúde, Secretaria de Atenção
à Saúde, Departamento de Ações Programáticas Estratégicas. – Brasília: Ministério da
Saúde, 2014. 86p.
15. CAPRA, F. – As conexões ocultas. São Paulo, Ed. Cultrix, 2002
16. CARNUT, L. Cuidado, integralidade e atenção primária: articulação essencial
para refletir sobre o setor saúde no Brasil. Saúde Debate. Rio de Janeiro, V. 41, N. 115,
P. 1177-1186, OUT-DEZ 2017
17. CARVALHO, D. G. Políticas públicas para a pessoa com deficiência – o Centro
Especializado de Reabilitação do Município de Duque de Caxias/RJ. Revista de Direito
Tributário e Financeiro. Belém, v. 5, n. 2, p. 01 – 20. 2019
18. DAMASCENO, A. N. et al. Redes de atenção à saúde: uma estratégia para
integração dos sistemas de saúde. Rev. Enferm. UFSM – REUFSM. Santa Maria, RS, v.
10, e14, p. 1-14, 2020
19. DE MARCHI, J. R. JUNIOR, W. M. NUNES, J. R. Abordagem comparativa:
intervenções terapêuticas em saúde mental na atenção primária do Brasil em relação ao
Canadá. Braz. J. of Develop, Curitiba, v. 6, n.12, p. 97793-97810 dec. 2020
20. FONTENELE, M. A. V. LOURINHO, L. A. Perspectiva da neurociência no
transtorno do espectro do autismo – TEA e a formação de professores. Braz. J. of
Develop., Curitiba, v. 6, n. 11, p.84539-84551, nov. 2020
21. FREITAS, E. Transtornos do neurodesenvolvimento: conhecimento,
planejamento e inclusão real. Rio de Janeiro: Wak Editora, 2019. 184p.
22. INOJOSA, R. M. – Revisitando as redes. Divulgação em Saúde para o Debate,
41: 36-46, 2008
23. LAURENT, E. A batalha do autismo: da clínica à política. Rio de Janeiro: Zahar,
2014. 224 p.
24. MAENNER, M.J. et al Prevalence of Autism Spectrum Disorder Among Children
Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites,
United States, 2016. Surveillance Summaries. March 27, 2020. 69(4);1–12
25. MENDES, E.V. As redes de atenção à saúde. Brasília: Organização Pan-
Americana da Saúde, 2011. 549p.
Brazilian Journal of Development, Curitiba, v.7, n.1, p.11391-11410 Jan. 2021Brazilian Journal of Development 11409
ISSN: 2525-8761
26. OLIVEIRA B. D. C. et al Políticas para o autismo no Brasil: entre a atenção
psicossocial e a reabilitação. Revista de Saúde Coletiva, Rio de Janeiro, 27 [ 3 ]: 707-726,
2017
27. Oliveira, L. H. S. et al. Atenção primária à saúde: sua importância no contexto da
saúde pública brasileira. Diversitas Journal, 5(4), 2806-2819.
28. OLIVEIRA, E. X. et al. – Territórios do Sistema Único de Saúde: mapeamento
das redes de atenção hospitalar. Cadernos de Saúde Pública, 20: 386-402, 2004.
29. OMS. ICD-11 for Mortality and Morbidity Statistics. 11 ed. 2018. Disponível em:
https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/437815624
30. _____. Classificação estatística internacional de doenças e problemas
relacionados à saúde (CID – 10). 9ed. São Paulo: Edusp, 2003.
31. OUVERNEY, A. M. – Os desafios da gestão em rede no SUS: situando a
regionalização no centro da agenda estratégica da política de saúde. Divulgação em Saúde
para Debate, 42: 12-22, 2008
32. ORTEGA, F. Deficiência, autismo e neurodiversidade. Ciênc. saúde coletiva,Rio
de Janeiro, v. 14, n. 1, p. 67-77,Fev.2009
33. PONTES, N. M. T. Paciente pediátrico portador de transtorno espectro autista em
um ambulatório: relato de experiência. Braz. J. of Develop., Curitiba, v. 6, n. 11, p. 85347-
85353, nov. 2020
34. POSSAMAI, V. R. Transtorno do espectro autista: atualização. Revista Saúde
Dinâmica 2020 (no prelo).
35. Raimundo, J.S.; da Silva, R.B. Reflexões acerca do predomínio do modelo
biomédico no contexto da Atenção Básica de Saúde no Brasil. Revista Mosaico, v.11,
n.2, p. 109 - 116, 2020
36. RAPIN, I; TUCHMAN, R. F. Autismo: abordagem neurobiológica. Rio de
Janeiro: Artmed. 2009. p. 1-34.
37. ROCHA, C. C. et al. O perfil da população infantil com suspeita de diagnóstico
de transtorno do espectro autista atendida por um Centro Especializado em Reabilitação
de uma cidade do Sul do Brasil. Revista de Saúde Coletiva, Rio de Janeiro, v. 29(4),
e290412, 2019
38. SILVA, L. S. FURTADO, L. A. R. O sujeito autista na Rede SUS: (im)
possibilidade de cuidado. Revista de Psicologia, v. 31, n. 2, p. 119-129, maio-ago. 2019
39. SURMEN, A. et al A study exploring knowledge, attitudes and behaviours
towards autism among adults applying to a Family Health Center in Istanbul. North Clin
Istanbul 2015;2(1):13-18
Brazilian Journal of Development, Curitiba, v.7, n.1, p.11391-11410 Jan. 2021Brazilian Journal of Development 11410
ISSN: 2525-8761
40. TIMLIN, U et al. Factors that Affect Adolescent Adherence to Mental Health and
Psychiatric Treatment: a Systematic Integrative Review of the Literature. Scandinavian
Journal of Child and Adolescent Psychiatry and Psychology Vol. 3(2):99-107 (2015)
41. VASCONCELOS-SILVA, P.R. CASTIEL, L.D. A internet na história dos
movimentos anti-vacinação. Campinas: Comciência. 2020
42. Valério, M. C. J. Melechenko, D. N. Melo, G. P. H. de, Fernandes dos Santos, I.
Rosário, M. E. F. do ., & Souza, R. P. de . (2020). Educação interprofissional através do
projeto terapêutico singular no PET-Saúde/ interprofissionalidade. Saúde E Meio
ambiente: Revista Interdisciplinar, 9(Supl.1), 55-56.
43. WESTPHAL, M.P. Utilização do diagnóstico em Saúde Mental: a percepção de
usuários e familiares de um Centro de Atenção Psicossocial. Dissertação [MESTRADO]
Programa de Pós Graduação em Psicologia, PUC-RS. 2019
44. WU, C et al The utility of the screening tool for autismo in 2-year-olds in detecting
autismo in taiwanese toddlers who are less than 24 months of age: a longitudinal study.
Journal of autismo and developmental disorders. 2020.-
Brazilian Journal of Development, Curitiba, v.7, n.1, p.11391-11410 Jan. 2021You can also read
