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AUTISM DIAGNOSIS: COMPARISON BETWEEN PUBLIC AND PRIVATE
SCHOOLS
Fernanda Correa1
Glenda Lisboa2
Shirlei Lizak Zolfan3
Abstract: This document results from a theoretical study, the objective of which was to discuss the
importance of conducting high-quality diagnoses of Autism Spectrum Disorder (ASD) and to compa-
re how this screening process is conducted through the Unied Health System (SUS) and specialized
private clinics. The research was conducted through a literature review and case study analysis to
assess the waiting time, cost, diagnostic quality, and follow-up care after the screening process had
been completed. Autism is a neurodevelopmental condition characterized by signicant decits in
communication, selective eating, and social interaction, as well as repetitive patterns of behaviors,
activities, and/or interests.
Keywords: Autism; Autism Spectrum Disorder; Autism Diagnosis; Early Diagnosis.
1 Psychology student
2 Psychology student
3 Master Professor supervising the Psychology course at the University Center of the Americas
- FAM
INTRODUCTION
The WHO (2021) estimates that 1 in 160 children in the world are diagnosed with ASD. In
Brazil, the prevalence of autism is estimated at 2 million individuals, applying the percentage of 1%,
as described in the DSM-5.
Considering the complexity of the symptoms and their levels of support, it is recommended
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that the diagnosis of autism be carried out by a multidisciplinary team (NICE, 2011) and that it is
not limited to the application of tests and exams. It is advised that, during the diagnostic process,
anamnesis, the determination of risk factors, physical and complementary examinations, in addition
to an analysis of the child’s cognitive functions (Brasil, 2015) are carried out (Brasil, 2015).
In 2013, the Government of the State of São Paulo developed, based on the guidelines of
the Ministry of Health and with multidisciplinary professionals specialized in autism, a protocol
for the diagnosis, treatment and referral of autism, ensuring reliability, ensuring a comprehensive
approach by involving multidisciplinary teams and reducing regional inequality, by expanding access
to diagnosis and its interventions after diagnosis (Paula, C. S., et al, 2018).
On the other hand, the protocol shows opportunities for improvement, as it faces the
insufciency of resources, materials and professionals, which affect the quality of the care provided
(Paula et al., 2018), in addition to not considering the diversity of the population’s individual needs
(Sousa & Alvarez, 2019). The long wait for the completion of the diagnostic evaluation and the start of
interventions demotivates families, causing delays in early interventions (Bordini et al., 2020).
Autism, as it is considered a neurodevelopmental disorder, has, among other characteristics,
persistent impairment in communications, social interactions, repetitive and restrictive patterns of
behavior, interest or activity, in addition to stereotyped behaviors, which are the repetitive use of
objects, speech and repetitive movements. Some autistic people may also have intellectual and/or
language impairment. (American Psychiatric Association, 2013, p.56)
It is essential to assess the need for genetic, metabolic or neurological tests to complete
the diagnostic process. It is also necessary to carry out a qualied listening to the family and the
child, observing their life history, family conguration, daily and school routine, clinical history and
interests of the child, in addition to the family’s complaint (Ministry of Health, 2015).
It is important that the entire diagnostic process is carried out by a multidisciplinary team
that is available to be with the child in different situations, not limited to the application of tests.
The SUS, being of universal access, faces limitations such as: scarce resources, few
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specialized professionals, long waits to schedule appointments and/or exams (Silva and Rocha, 2019).
Using the state of São Paulo as a parameter, about 70% of the population depends exclusively
on the services provided by the SUS (Brasil, 2023).
The Basic Health Unit (UBS) is the gateway to any and all health care. It is responsible for
the management and activation of other resources of the Public Network for the care of different
health demands (CONASS, 2003).
According to the Ministry of Health (2023), during the ASD diagnosis process, it is necessary
for the child to bond with a professional on the team. This bond is important for any adaptation and
referrals that may be necessary.
To start the service, the patient arrives at the UBS at the request of the family or under
the guidance of professionals from other sectors, such as daycare centers, schools, etc. Less severe
situations are maintained in treatments by the following resources: UBS, Family Health Strategy
Teams (ESF) and Expanded Family Health Center (NASF). In cases of diagnostic doubt, the child
should be referred to the CAPS.
The CAPS is the resource of the Psychosocial Care Network (RAPS) responsible for the
entire Singular Therapeutic Project (PTS) and for the reference in mental health. The PTS aims to
assess the needs that will be addressed in order to improve the quality of life, social inclusion and
autonomy of the child. It must be reassessed regularly, which will make it possible to identify which
areas need to be adapted or which need to be replanned (São Paulo, 2014).
At the unit, a screening will be carried out to carry out the diagnostic process which, after a
multiprofessional evaluation, will determine the level of complexity, and may refer the child back to
the service of origin, UBS, or if it is a more serious situation, the interventions will be carried out by
the CAPS team itself.
In specic cases, the subject may be referred to university services, or to other specialized
reference services, such as the Association of Parents and Friends of the Exceptional (APAE) or Non-
Governmental Organizations (NGOs).
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Interventions should be directed at the service, using the points raised in the STP and it is
up to the professional in charge to identify what will be the best therapeutic approach at that moment
(São Paulo, 2014).
With the advancement of studies focused on autism on the development of skills, better
scientic evidence has been observed with the use of Applied Behavior Analysis (ABA), social skills
training and Cognitive Behavioral Therapy (CBT).
ABA has been shown to be effective in promoting the development of adaptive and functional
skills (Camargo and Rispoli, 2013), in addition to allowing autistic children to have an effective
development, with positive impacts throughout life (Cooper, Heron and Heward, 2007), using positive
reinforcement techniques, modeling and other techniques. The second, on the other hand, helps in the
management of anxiety and challenging behaviors (Moree & Shaw, 2017; Storch et al., 2013).
The absence of access to the diagnosis of autism generates negative psychological
consequences for the child and, consequently, for his family. Children lose an important window
to receive support during their cognitive and social development (Silva and Rocha, 2019), which can
increase the risk of social isolation, depression, and low self-esteem (Autismo Brasil, 2020). Family
members, on the other hand, can due to great emotional overloads and high levels of stress (Muskat
et al., 2015).
GOALS
GENERAL OBJECTIVE:
To investigate the responsibilities of the Public Health Network (SUS) in relation to the autism
diagnosis process, while a comparison is made between the challenges faced in the public network
(SUS) and in the private network. Using specialized clinics as a parameter, with a focused look at the
implications for the quality of service provided.
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SPECIFIC OBJECTIVE:
Analyze the waiting time for consultations and exams until the conclusion of the evaluation,
nancial cost, the quality of the diagnosis, how the child is monitored after diagnosis. Identify which
factors have the greatest inuence on the agility and accuracy of diagnosis. To discuss the contribution
of the Protocol of the State of São Paulo to the diagnosis of autism in children and to verify the need to
improve the process of diagnosis of ASD and post-diagnosis care, with a view to equity, effectiveness
and efciency of the network’s services.
METHODS
For the proposed study, a bibliographic research was carried out, a methodology that starts
from the survey of previously analyzed theoretical references. These references can be found in
electronic media, in the form of articles, websites, or as physical publications made by the authors.
According to Fonseca (2002), any scientic work begins with a bibliographic research, by allowing to
know what has already been studied on the subject and in the search for theoretical references in order
to collect previous knowledge on a given subject in which an answer is sought.
For the theoretical basis, searches were carried out in the Scientic Electronic Library
Online (SciElo), Scribd virtual library, Virtual Health Library (VHL) and CAPES journals. The
following points were dened as criteria for conducting the searches: publications from 2013 to 2023,
in Portuguese and English. The descriptors used were: Diagnosis, Child Diagnosis, ASD, Autism,
SUS, Public Policies. A total of 60 articles were analyzed, and among these, 35 articles were used. The
criteria for using the articles were: child development milestones, the Cognitive Behavioral Therapy
(CBT) approach, Applied Behavior Analysis (ABA) and the autism diagnostic process carried out by
the SUS. Articles on the subject were excluded, but the focus was not on the diagnosis of children,
but on the importance of early diagnosis. To illustrate the results, three case studies were used on the
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diagnostic process of children aged between 6 and 8 years, living in the state of São Paulo, carried out
by the SUS and specialized private clinics.
RESULTS AND DISCUSSION
Using case studies as examples for the elaboration of the project results. The diagnosis of
autism in children between 6 and 8 years old, living in São Paulo, was used as a parameter. In the
case studied, the school identied learning difculties, when compared to the rest of the class, asked
the mother to attend school and suggested referral to the CAPS. The unit’s neuropsychologist raised
the hypothesis of autism and started the process for diagnosis. After a long wait, the child’s mother
could not say exactly, but commented that it took a few months to carry out the requested tests. With
the results, the child was referred to the Association for Prevention, Specialized Care and Inclusion of
Persons with Disabilities of Ribeirão Pires (APRAESPI). There, there was a new referral to another
unit, from APRAESPI itself, where the diagnosis process was continued. The child underwent
psychological care, but there was no detail of these steps for the mother to be aware of each part of the
process. The diagnosis of autism was nalized after 12 months. The mother reports that she felt the
lack of welcome from the units, whether explaining what autism is and its levels of support, what the
challenges may be or what the child’s development would be like from that moment on.
To compare how the diagnosis of autism is made in private specialized clinics, a case study
of two private clinics located in the same municipality, Suzano — São Paulo, was observed. The
evaluation process, of the rst clinic, is faster when compared to the SUS period. The diagnostic
evaluation can cost around R$ 1,300.00 (one thousand three hundred reais). In the rst case, the
diagnostic screening takes around seven sessions, lasting an average of forty minutes. During the
sessions, with the multidisciplinary team, an interview with the parents, anamnesis and scale tests
are carried out. Psychological tests and scales may vary according to the child’s limitations, but it is
common to use the Columbia Mental Maturity Scale 3 (CMMS-3), which assesses skills, competencies,
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intelligence, and neuropsychological processes, or the Dimensional Inventory for the Assessment of
Child Development (IDADI), which is a multidimensional instrument for assessing child development.
Also part of the process is the assessment of cognition, motor skills and adaptive behaviors. In the
second clinic, the evaluation is done only with the neuropsychologist, with thirty-minute sessions
and diagnosis completed in fteen days. Although they have greater agility in the diagnostic process
and impact the accuracy of the process, in addition to access to the multidisciplinary team, private
clinics are only accessible to a portion of the population (Sato and Tanaka, 2020). This difference can
impact the diagnostic process of children with suspected ASD. This generates inequality in access to
specialized care. Comparing the time for diagnosis to be completed, the resources to be used during
the diagnostic process and their availability is essential to identify opportunities in public policies to
ensure effectiveness, efciency and quality of diagnosis.
CONCLUSION
Based on the cases mentioned, it was possible to observe that the main factors that diverge
between the diagnostic process provided by the SUS and the clinics of the private network are the time
to complete the diagnosis, the nancial cost and the absence of multidisciplinary work. Considering
the case studies mentioned above, it is necessary to have new public policies that seek equal access
to the diagnosis of ASD, since quality of life and improvement in child development is linked to the
early diagnosis of autism. Based on the complexity of the subject, new studies should be carried out
to broaden the view of how the diagnosis of children with suspected autism is carried out in the rest
of the country, in order to explore new realities about the process of evaluation and diagnosis of ASD
and to explore the perception of families regarding the care provided via SUS and through the private
network. With this, it will be possible to identify points of improvement in the diagnosis of autism.
Finally, it is also recommended to establish a new protocol, adapting it to the levels of support,
so that the diagnostic process is as accurate and humanized as possible. A guideline that extends
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screening to children under eighteen months, and the Modied Checklist for Autism in Toddlers
(M-CHAT) scale can be used. M-CHAT is a screening scale that aims to identify subtle signs of
autism in children. It is suggested to expand the number of professionals from the public network
trained in autism to be able to identify signs from the rst consultations. This will allow greater agility
in diagnosis, in addition to ensuring greater coverage of the population. Ensure that the participation
of the multiprofessional team, not limited to psychiatrists, pediatricians and psychologists, but also
include occupational therapists, speech therapists, physical educators, among others. The multi
team ensures a more complete and accurate view. The use of technologies to complement care and
facilitate screening. The use of technology concomitantly with a humanized and multidisciplinary
approach tends to help screening and ensure that more children have access to early diagnosis. Work
on psychoeducation, providing materials for parents and the community on the signs of autism and
how to seek help. In addition, contemplate continuous monitoring aimed at the child’s development.
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