Abstract

The term stigma comes from Greek, being related to the identification of people through a physical mark, which can generate marginalization. The literature points out four types of stigmas: public, institutional, self-esteem, and courtesy. People with Autistic Spectrum Disorders are stigmatized in various cultures and societies. This study describes the view on stigma regarding Autistic Spectrum Disorder among undergraduate medical and nursing students. This is a cross-sectional study of a qualitative approach, whose data were collected through two focus groups, one with medical and another with nursing students, from a public university in Alagoas, Brazil. A script with eight questions for discussion in the focus groups was used. The speeches were recorded, transcribed, and analyzed with the IRAMUTEQ software, based on content analysis. The Descending Hierarchical Classification showed five categories related to the disorder, which were: 1 - Approach to the person with the disorder; 2 - Experience of Stigma; 3 - Segregation of People with Disorders; 4 - Care of the Person with the Disorder and Class; 5 - Challenges faced by the people affected.

Key words:
Stigma; Autistic Spectrum Disorder

Introduction

The term stigma originated from a Greek concept related to the practice of physically marking, through cuts or burns, people as criminals, traitors, and slaves, so that they could be easily identified and socially avoided. Today, such physical marking has resulted in the attachment of a certain attribute to a negative stereotype disqualifying the full social acceptance of the devalued individual¹1 Goffman E. Estigma: Notas sobre a Manipulação da identidade deteriorada. Rio de Janeiro: Zahar; 1982..

Stigma might be visible or not, pointing to a condition in the subject, that disqualifies him/her from acceptance by society, causing attitudes of discrimination from other people²2 Oliveira ARF, Azevedo SM. Estigma na doença mental: estudo observacional. Rev Port Med Geral Fam 2014; 30(4):227-234..

There are four types of stigma, public stigma being that which is revealed through society’s reaction to a person who is assigned a certain stigma. Another type is institutional stigma, which occurs through the legitimization of stigma by institutions in society. The third type is self-stigma, which occurs in the face of the psychological and social impacts that the stigmatized person attributes to himself/herself due to the suffering of the public stigma to which he/she has been subjected. The fourth type is the courtesy stigma or stigma by association, which is the community’s way of reacting toward an individual linked to a stigmatized subject³3 Pryor JB, Reeder GD, Monroe AE. The infection of bad company: stigma by association. J Pers Soc Psychol 2012; 102(2):224-241..

People may suffer the impact on their mental health when subjected to a situation caused by stigma, which can cause damage to the society in which the individual lives and to the stigmatized individual him/herself. By exposing him/herself to this situation, the subject can be inhibited in seeking care; if he/she presents any mental disorder, the situation worsens due to the fear of exposing him/herself in an attempt to seek support⁴4 Prado AL, Bressan RA. O estigma da mente: transformando o medo em conhecimento. Rev Psicopedag 2016; 33(100):103-109.. People are stigmatized in a context that encompasses culture, political history, economy, and social aspects. Thus, stigma reflects the society where the subject is inserted in a given time, but also moral, intellectual, and cultural tendencies⁵5 Ainlay SC, Becker G, Colman LM. Stigma reconsidered. In: Ainlay SC, Becker G, Colman LM. The dilemma of difference. New York: Plenum; 1986. p. 1-13..

Autism Spectrum Disorder (ASD) is a biologically based neurodevelopmental disorder characterized by impairments in two main domains: (1) deficits in communication and social interaction and (2) repetitive and restricted patterns of behavior, interests, and activities⁶6 Medavarapu S, Marella LL, Sangem A, Kairam R. Where is the evidence? A narrative literature review of the treatment modalities for autism spectrum disorders. Cureus 2019; 11(1):e3901.. About one in 54 children has ASD, according to estimates from the Centers for Disease Control and Prevention (CDC); 4.3 times more prevalent among boys⁷7 Baio J, Wiggins L, Christensen DL, Maenner MJ, Daniels J, Warren Z, Kurzius-Spencer M, Zahorodny W, Robinson Rosenberg C, White T, Durkin MS, Imm P, Nikolaou L, Yeargin-Allsopp M, Lee LC, Harrington R, Lopez M, Fitzgerald RT, Hewitt A, Pettygrove S, Constantino JN, Vehorn A, Shenouda J, Hall-Lande J, Van Naarden Braun K, Dowling NF. Prevalence of autism spectrum disorder among children aged 8 years - Autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveillance Summaries 2018; 67(6):1-23.. The diagnosis of ASD is considered a spectrum, which means that there is a varied clinical presentation of characteristics in these individuals. Thus, there are people with different abilities and difficulties in their communication, social interaction, and behavior patterns⁸8 American Psychiatric Association (APA). DSM-5 - Manual diagnóstico e estatístico de transtornos mentais. Porto Alegre: Artmed; 2014..

It is important to note that the attributes described are not intrinsic to the people, but conferred by society itself. The stigma, therefore, is not rooted in the ASD, but in the categorizations made by society, using its outputs, its works, its memories, its conversational elements, and its speech⁹9 Ries IL. As interações comunicacionais em comunidades online sobre autismo: conexões em busca por reconhecimento [dissertação]. Curitiba: Universidade Tuiuti do Paraná; 2018..

The literature points out that stigma can often cause distance between people. Such a situation denotes the importance of studying stigma among medical and nursing students in order to contribute to their future education by recognizing their difficulties and lack of knowledge, especially in the case of ASD, which has been increasing its prevalence in recent times¹⁰10 Gil IMA, Santos JCP, Loureiro LMJ. Estigma em estudantes de enfermagem: antes e depois do contacto com pessoas com transtornos mentais. Rev Enferm UERJ 2016; 24(1):e12309.

11 Rostill-Brookes H, Goodman D. Estigma público em estudantes de saúde e não profissionais de saúde: atribuições, emoções e vontade de ajudar na auto-agressão de adolescentes. Rev Int Estud Enferm. 2009; 46:108-119.^-1212 Querido A, Tomás C, Carvalho D. O estigma face à doença mental nos estudantes de saúde. Rev Port Enferm Saude Mental 2016; (n. esp 3):62-72..

Therefore, in view of the aforementioned findings, this study was conducted to investigate whether there is evidence of stigma about ASD among undergraduate medical and nursing students at a public university in the state of Alagoas, Brazil. The research question is: Do medical and nursing students have a stigmatized view of people with ASD?

Method

Study design, study site, and participants

This is an observational study, of qualitative approach, carried out through two focus groups with medical and nursing students in a public university in Alagoas.

Sixteen students participated in the research, ten from the medical major and six from the nursing major. Fictitious names were created to present the students’ speeches, aiming at anonymity.

Data collection procedures

Data collection occurred in April 2019, through the focus group technique - applied at two moments, on different days and locations, one with medical students and another with nursing students. Two groups were conducted due to the understanding that the experiences and curricula in each one present specific aspects of the area. The groups were conducted by a previously trained facilitator, assisted by three observers, also previously trained. Initially, all participants were given the Free and Informed Consent Term (FICT) to read and sign, and then the discussions started. All the speeches were recorded and then transcribed in a free-access text editor (Open Office - http://www.openoffice.org). The norms of Resolution No. 466, dated December 12, 2012, were followed. The project was approved by the Research Ethics Committee (CEP) of the Federal University of Alagoas, according to the protocol - Process No. 77609417.2.0000.5013.

Instrument

A script with eight open-ended questions was used: understanding of stigma, approach to the topic during undergraduate studies; experience of stigmatizing situations, knowledge about ASD; knowledge about the family life of children with autism and the presence of stigma; challenges of children with ASD; suggestions for approaching the two topics during undergraduate studies.

Data Analysis

A computerized textual analysis was carried out using the IRAMUTEQ software (Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires - http://www.iramuteq.org). It is a GNU GPL (v2) licensed software that allows doing statistical analysis on textual data and is anchored in R software (www.r-project.org) and Python language (www.python.org). IRAMUTEQ allows different types of textual data analysis, whether simple, such as basic lexicography which covers lemmatization and word frequency calculation, as well as multivariate analysis such as hierarchical descent classification, correspondence factor analysis, and similarity analysis.

This software is based on calculations performed on the co-occurrence of words in text segments, aiming to gather them into classes according to their similarity and dissimilarity. It aims to obtain a number of classes, through a statistical classification of simple utterances from the analyzed corpus (here are answers given by the participants), according to the distribution of words within the utterance, in order to apprehend the words that are more characteristic to them, that is, more significantly present by the association coefficient [χ² (1) ≥3.84, p≤0.05] of the word to its position in the text¹³13 Camargo BV, Justo AM. Tutorial para uso do software IRAMUTEQ - (Interface de R pourles Analyses Multidimensionnelles de Textes et de Questionnaires) [Internet]. Florianópolis: LACCOS; 2018 [acessado 2022 jul 12]. Disponível em: http://iramuteq.org/documentation/fichiers/tutoriel-portugais-22-11-2018.

14 Nascimento ARA, Menandro PRM. Análise lexical e análise de conteúdo: uma proposta de utilização conjugada. Estud Pesqui Psicol 2006; 6(2):72-88.^-1515 Reinert MA. Version 4.0: Windows (Manual). Toulouse: Societé IMAGE; 1998.. Furthermore, by means of the Factor Correspondence Analysis (FCA), a description is possible, crossing the vocabulary and the classes, by means of a graphic representation, in which the axes allow visualizing the relations and/or oppositions between the classes¹⁶16 Alba M. El método ALCESTE y suaplicación al estudio de las representaciones sociales del espacio urbano: el caso de laciudad de México. Peer J 2004; 13(1):1-20.^,1717 Camargo BV. ALCESTE: um programa informático de análise quantitativa de dados textuais. In: Moreira ASP. Perspectivas teórico-metodológicas em Representações Sociais [Internet]. João Pessoa: Universitária UFPB; 2005 [acessado 2021 ago 12]. Disponível em: https://www.researchgate.net/publication/260284383_Perspectivas_Teorico-Metodologicas_em_Representacoes_Sociais..

IRAMUTEQ decomposes text into text segments and performs a classification according to vocabulary distribution. Initially, the statistical analysis performed consists of a Descending Hierarchical Classification (DHC), with the objective of calculating the partitions into lexical classes and presenting their relationships in the form of a tree (dendrogram). Next, a Correspondence Factor Analysis (CFA) is performed to visualize, in a Cartesian plane, the relationships and/or oppositions resulting from the DHC. Computerized text analysis organizes the structured content from a statistical analysis into a DHC, which aims to establish a division among the Classes as clearly as possible.

The dendrogram allows one to verify the relationship between the classes [strong connection (proximity) or weak (distance)] and the representativeness of each class, from the explanation percentage of the evaluated corpus that enables the understanding of the interrelationship between the classes¹³13 Camargo BV, Justo AM. Tutorial para uso do software IRAMUTEQ - (Interface de R pourles Analyses Multidimensionnelles de Textes et de Questionnaires) [Internet]. Florianópolis: LACCOS; 2018 [acessado 2022 jul 12]. Disponível em: http://iramuteq.org/documentation/fichiers/tutoriel-portugais-22-11-2018.^,1515 Reinert MA. Version 4.0: Windows (Manual). Toulouse: Societé IMAGE; 1998.^,1818 Loubère L, Ratinaud P. Documentation IRaMuTeQ [Internet]. Paris: LERASS; 2014 [cited 2021 ago 12]. Available from: http://www.iramuteq.org.
http://www.iramuteq.org... .

The Reinert method (DHC) and the parameterization “SIMPLE SUR SEGMENTS DE TEXTE”, which corresponds to the smallest meaningful text fragment - equivalent to an analysis of the text segments delimited by the software (Standard Analysis) for long answers, that is, more than three lines of each text - were adopted.

Results

The corpus of this study consists of 84 texts divided into 269 text segments - corresponding to 74.31% of the total (362 text segments). After text analysis, five classes were listed: care, coexistence, stigma, challenge, and knowledge (Figure 1).

The classes were named according to the words that best define them that is, with the highest χ² value and the highest percentage - for example, 100% means that the word was mentioned only within its own class. Class 1 comprised 20.1% of the corpus; Class 2 corresponded to 18.2%; class 3 to 14.9%; class 4 to 19.7%; and, class 5 to 27.1% of the corpus. To understand the relationship between the classes, the dendrogram of Figure 1, was divided (1st partition or iteration) into two sub-corpus, splitting classes 4, 3, and 2 from classes 5 and 1. Then, the larger sub-corpus (classes 4, 3, and 2) was divided, splitting class 4 from classes 3 and 2 (2nd partition or iteration).

Classes 3 and 2 are closely related, as are classes 5 and 1. Likewise, classes 5 and 1. Class 4 is the most isolated, but is closer to the sub-corpus composed of classes 3 and 2. It is not by chance that the classes are related in this way. Class 4 comprises the identification and the first consultation or search for help/care (it was named “Care”). Classes 3 (“Coexistence”) and 2 (“Stigma”), contemplate the importance of having lived with someone with ASD to be able to identify characteristics (specific to people with ASD) and the existence of stigma. Classes 5 (“Challenge”) and 1 (“Knowledge”) understand how students perceive the insertion of the person with ASD in society (challenges they will have to deal with) and how they build their knowledge on the subject in their academic training.

Below are some text segments that exemplify each category, which resulted after content analysis.

• Category 1 - Approaching the person with ASD.

• Category 2 - Experiencing Stigma among the interviewed students.

• Category 3 - Coexistence and segregation of a person with ASD.

• Category 4 - Caring for the person with ASD.

• Category 5 - Challenges presented by people with ASD.

In the Correspondence Factor Analysis (CFA) we observed the relationships among the categories that are presented in Figure 2.

It is clear that categories 2 (Stigma) and 3 (Coexistence) are highly related, with a greater mix of the defining words. The others present themselves with a lesser mix of words.

Discussion

Category 1, Approaching the Person with ASD, presents the opinion of the students surveyed about the need to learn the several aspects of ASD. Not only the biological knowledge but also the ways of dealing with it in everyday life, aiming at the possibility of reducing fears, difficulties in relationships and treatment, as well as the stigma about this disorder.

The lack of information enhances discriminatory and prejudiced attitudes and hinders the learning process focused on mental health. The provision of information on the subject during graduation, in the most diverse forms - seminars, elective courses, conversation circles, dialogue with parents and caregivers of people with ASD, and even the subjects who are in this condition - would make it possible to differentiate and understand what a disorder is and the possible absence of it. Only with quality information can the stigma pertaining to the health of the mind be overcome⁴4 Prado AL, Bressan RA. O estigma da mente: transformando o medo em conhecimento. Rev Psicopedag 2016; 33(100):103-109..

The general population, including medical and nursing students, when they have little knowledge about ASD, can cause suffering through stigmatizing processes, most often for those with ASD¹⁹19 Milacic-Vidojevic I, Gligorovic M, Dragojevic, N. Tendency towards stigmatization of families of a person with autistic spectrum disorders. Int J Soc Psychiatry 2014; 60(1):63-70..

The Stigma suffered by those surveyed, appears in the category below.

Category 2, Students’ Experiences of Stigma, through reports of some incidents experienced by them. We identified stigmatizing situations related to not being part of the local culture, i.e., being from another state, having a different sexual orientation from the majority of the class, being obese, and attending more free-thinking courses, such as courses in the humanities area.

The experiences reported by students as negative situations regarding sexuality, physical appearance, and coming from another place can generate: labelling, stereotyping, separation, and devaluation of the subject, which, together with discrimination, constitute stigma - considering that society tends not to accept human differences, such as skin color, social origin, and sexual orientation, which are stigmatizing aspects. The process of stereotyping occurs through a selection of human differences that matter socially and are rendered undesirable characteristics²⁰20 Link BG, Phelan JC. Variations in the definition of stigma & challenges to the stigma concept. Annu Rev Sociol 2001; 27:363-385..

Socially shared beliefs can generate stereotypes about subjects of a social category, assuming the possibility of group homogeneity and common behavior belonging to the social group, based on propositions about factors that produce models of subject behavior, evidenced in judgments founded on assumptions about the existence of the exchange of psychological traits among members of the same social category²¹21 Pereira ME. Definição de estereótipos. Estereótipos: os estereótipos e a psicologia social [Internet]. Salvador; 2008 [acessado 2021 ago 12]. Disponível em: https://estereotipos.net/2008/07/05/definicao-de-estereotipos.
https://estereotipos.net/2008/07/05/defi... .

Category 3, Coexistence and Segregation of People with ASD, demonstrate the difficulty of those responsible for including and caring for people with ASD in society and their exclusion in everyday interactions.

Society has norms and values that define the attributes and behaviors that are acceptable for its components. It has forms of social control to ensure that most of them conform to the established norms. Subjects who do not conform to these rules or break social taboos can be socially excluded²²22 Becker G, Arnold R. Stigma as a social and culture construct. In: Ainlay SC, Becker G, Colman LM. The dilemma of difference. New York: Plenum; 1986. p. 39-57., which corroborates the reports of those surveyed here.

Disability in any aspect of human life can lead to the suffering of stigma, a procedure in which different subjects are marginalized, segregated, and belittled by society for having values, characteristics, or practices distinct from the dominant culture²³23 Rüsch N, Angermeyer MC, Corrigan PW. Mental illness stigma: concepts, consequences, and initiatives to reduce stigma. Eur Psychiatry 2005; 20(8):529-539.. The segregation reported by students regarding people with ASD is brought by history through the various ways of treating the “different” individual. For a long time, there was the marginalization and segregation of those who were considered different from others, but as human rights have been consolidated, the way to look at people who are different has changed²⁴24 Clérico L. Discriminación por orientación sexual y derechos de laseguridad social enlajurisprudencia de la Corte Interamericana de Derechos Humanos (Corte IDH) y del Tribunal Europeo de Derechos Humanos (TEDH). ¿Una história de divergencias? Rev Fac Der 2019; 47:e105..

It is understood that it is important that society knows how to live with diversity among its members because no human being (especially those with ASD) should be condemned to segregation, either by misinformation or prejudice. Understanding the disorder enables the recognition of the difficulties that these people face, whether they are children, adolescents, or adults, leading to work for their inclusion in society, enabling the pursuit of their citizenship, and also offering support to family members to overcome the challenges²⁵25 Bentes CCA, Barbosa DC, Fonseca JRM, Bezerra LC. A família no processo de inclusão social da criança e adolescente com autismo: desafios na sociedade contemporânea [monografia]. Presidente Prudente: Centro Universitário Antônio Eufrásio de Toledo; 2016..

In Category 4, Care for the Person with ASD, the speeches show how people have difficulty accepting the diagnosis, which is shown in the various spaces attended by individuals with this condition to seek their treatments and mental health care, specifically those with ASD.

The first social institution and through which the child has access to society is the family, thus being the main space for socialization. Family members, as important social members in the child with ASD’s life, should provide basic care according to their needs, playing an important role in their development and growth²⁶26 Maia Filho ALM, Nogueira LANM, Silva KCO, Santiago RF. A importância da família no cuidado da criança autista. Rev Saude Foco 2016; 3(1):66-83..

Studies conducted in Brazil on ASD show an increase in Brazilian scientific production, however, these publications do not specifically focus on actions that promote the improvement of autism care. Efforts are needed in this direction so that the studies can contribute more to the definition of public policies for the disorder²⁷27 Paula CS, Fombonne E, Gadia C, Tuchman R, Rosanoff M. Autism in Brazil - perspectives from science and Society. Rev Assoc Med Bras 2011; 57(1):2-5..

The data found brings the students’ perspective on the involvement and family relationship with people with ASD. The family is the place where the child begins his/her socialization, and it is also the main structure of his/her care, which embraces his/her needs and is predisposed to contribute to the development of his/her potentialities. The appearance of a chronic situation can lead to the fragilization of the family when it is trying to manage this challenge²⁸28 Brasil. Ministério da Saúde (MS). Diretrizes de atenção à reabilitação da pessoa com Transtornos do Espectro do Autismo (TEA) [Internet]. Brasília: MS; 2014 [acessado 2022 mar 12]. Disponível em: https://bvsms.saude.gov.br/bvs/publicacoes/diretrizes_atencao_reabilitacao_pessoa_autismo.pdf..

Category 5, Challenges faced by People with ASD. This category demonstrates the potential of the students’ sensitivity towards these people, in addition to the need for openness to new learning, so that the relationship between the subjects with ASD can happen and thus they can develop anti-stigma interventions during the degree.

Characterized mainly by relationship deficits, sometimes ASD can lead to intellectual deficits, which is a common comorbidity, causing challenges in the lives of people with the disorder and their families/caregivers. In recent years, there has been an active participation in movements involving people with low-severity ASD, highlighting the greater activism of their parents. Even so, the challenges are still many²⁹29 Rios C. "Nada sobre nós, sem nós"? O corpo na construção do autista como sujeito social e político. Sex Salud Soc 2017; 25:212-230..

Since there is no biological marker that genetically determines ASD, and since it has a broad picture, the presence of a multidisciplinary team with experience is important, both to act in the identification of cases and in the care process, being each practitioner responsible for their actions, but with an eye on the individual as a whole³⁰30 Paula CS, Belisásio Filho JF, Teixeira MCTV. Estudantes de psicologia concluem a graduação com uma boa formação em autismo? Psicol Teor Prat 2016; 17(3):206-221..

The variability of symptomatology contributes to the complexity of diagnosis, evaluation, and follow-up requires experience and knowledge of professionals from various specialties. Studies show different qualifications among the professionals involved, varying from one place to another. For the necessary care, the participation of reference professionals from various spatialities is important, which contributes to early diagnosis³¹31 Buffle P, Naranjo D. Early identification and diagnosis of autism spectrum disorder: a literature review on evidence-based recommendations. Rev Ecuatori Ped 2021; 22(3):1-19..

To alleviate this situation, it is important that the person with ASD be assisted by a multi-professional team that intervenes early on, enabling the best performance and achievement of skills. This requires the use of specialized therapies, such as those aimed at social integration, to improve sensory processing and behavioral organization³²32 Valdez-Maguina G, Cartolin-Principe R. Desafíos de la inclusión escolar del niño con autismo. Rev Med Hered 2019; 30(1):60..

Social contact is the most effective type of intervention for improving knowledge, information, and attitudes related to stigma in the short term. However, there is evidence of long-term benefits from social contact to reduce stigma. Given the magnitude of the challenges that result from stigma and discrimination in mental health, a collaborative effort is needed to fund methodologically strong research that provides robust evidence to inform investment decisions to intervene and reduce stigma³³33 Graham T, Mehta N, Clement S, Evans-Lacko S, Doherty M, Rose D, Koschorke M, Shidhaye R, Henderson C, Thornicroft G. Evidence for effective interventions to reduce mental health-related stigma and discrimination. Lancet 2016; 387(10023):1123-1132..

Through contact theory, it is recommended that increased social contact can attenuate stigma, especially internalized stigma³⁴34 Allport GW. The nature of prejudice. Boston: Addison-Wesley; 1954..

Conclusion

It can be concluded that the surveyed students recognize the existence of stigma and that they propose strategies to demystify this conception resulting from the society they belong to.

It was clear that the education system still does not have enough tools to break the barriers and provide nursing and medical students with a better relationship, understanding, and care for the person with ASD.

Thus, approaches to ASD need to be shared among the university, students, caregivers, and people with ASD, with a social and not merely welfare view.

References

Publication Dates

History