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Abstract

Understanding what people believe the causes of autism to be has implications for experiences of familial guilt and stigma. Using a qualitative approach, we investigated how Brazilian healthcare professionals, parents of young and adult autistic people and young and adult autistic people consider the origins of autism and the interaction between the biological and social environment concerning the challenges autistic people encounter. Eight health professionals who assist autistic people, five young autistic people, six family members of young autistic people, five autistic adults, and four parents of autistic adults participated in the research. After analysis, two major coding themes emerged from the interviews: (T1) Perceived origins of autism: genetic, environmental, or both, (T2) The impact of the structured family environment. Our respondents consider autism in Brazil strongly related to genetic origins and little to environmental and social origins. At the same time, the context of the structured social and family environment can influence challenges and opportunities for autistic people.

Keywords

Autism causes genes environment social

Introduction

Autism is a phenomenon that is defined in the DSM-5 by social and communication differences and restricted or repetitive behaviors associated with particular everyday challenges (Hyman et al., 2020). In 2020, the Centers for Disease Control and Prevention (CDC) identified that the prevalence of autism in children up to 8 years of age in the United States is 2.8% of the population, 1 in every 36 births, and is four times more common in sex male and occurs across all racial, ethnic, and socioeconomic groups (CDC, 2021). In Brazil, no analysis of the public health system has assessed prevalence throughout the national territory. It is believed that Brazil has 6 million autistic people, as when correlating CDC data from 2.8% of the affected population, it is estimated that Brazil, with 213.3 million inhabitants (IBGE, 2021), has 5.295 million autistic people. Considering the projection for 2023 of 215.9 million inhabitants, the projected number of autistic people could reach 5.997 million (Junior, 2023). These data are in children up to 8 years of age, and when late diagnosis is taken into account, in young people or adults, the prevalence may even be higher.

The scientific community generally assumes that the etiology of autism is complex, influenced by a multifactorial mechanism involving genetic and environmental factors (Evangelho et al., 2021; De Leeuw et al., 2020). In Brazil, there seems to be a consensus among scientists regarding the causes of autism as a complex set of genetic and environmental factors (Chaste & Leboyer, 2012; Freitas et al., 2014; Sandin et al., 2014). The authors Kubota et al. (2012), Loke et al. (2015), and Constantino & Marrus (2017) reinforce that autism is caused by a combination of genetic and environmental factors.

The autistic community has alerted the scientific community about the dangers of focusing research solely on the genetic causes of autism, as this may lead to the medicalization of autism, conceptualizing it as something that needs to be prevented or cured, and may obscure the understanding of the lived experiences of autistic individuals. Focusing exclusively on biological factors risks ignoring the social, environmental, and behavioral aspects of autism that are vital to daily life. This reductionist view can lead to the dehumanization of autistic individuals, simplifying their identities and experiences to mere genetic codes or neural patterns (Pellicano & Stears, 2011). This occurs partly because there is a notable gap between the funding of autism research and the priorities of the autistic community, which emphasizes the need for research that impacts daily life (Pellicano, Dinsmore & Charman, 2014). Wright et al. (2014) stress that autistic communities need research emphasizing community engagement, participatory methods, and real-world interventions, focusing on the person-environment dynamic and addressing the gap between research and practice in autism interventions. Empowerment in decision-making and active participation in research is primary needs of autistic communities, emphasizing the principle of “nothing about us without us” (Cascio, Weiss & Racine, 2020).

The topic of autism has gained prominence in Brazilian scientific literature, although there are gaps that need investigation, particularly in understanding the research priorities regarding autism in Brazil from the perspective of autistic communities. A review of the Brazilian scientific literature on autism in the fields of Psychology and Education identified 156 articles in Brazilian journals from 2007 to 2012. Studies were found on topics including (1) theoretical review works; (2) assessment and clinical manifestations; (3) prevalence and comorbidity; (4) assessment instruments; (5) family relationships; (6) interventions; and (7) schooling and teaching-learning (Guedes & Tada, 2015). The analysis conducted by Wuo (2019) of theses and dissertations from 2008 to 2016 in the South and Southeast regions of Brazil shows that most works adopt a predominant biomedical discourse in explaining autism, focusing on deficits and psychological and social disabilities. The authors criticize how research describes autism, arguing that it can generate stigma and promote exclusion instead of inclusion. Brazilian scientific research on autism has mainly focused on the diagnosis of autism and interventions, often addressing only isolated aspects of the disorder and ignoring its complex historical and social constitution throughout human development and the priorities of autistic individuals in research. In this context, it is essential to not only conduct studies that go beyond just diagnosis and interventions but also consider the difficulties and potential of autistic individuals and the voice of the autistic community in research. These studies should propose solutions that promote true social inclusion and, consequently, improve the quality of life of autistic individuals.

Although understanding of the causes of autism has evolved, the legacy of blame remains a significant social issue, complicating discourse about the disorder and its treatment (Courcy & Rivières, 2017). For some time, it has been discussed that the way a genetic disease is inherited may have social and psychological impacts on affected families. This includes concerns about the health of future children, feelings of stigmatization and guilt, as well as possible conflicts between parents. Unresolved guilt in parents of children with disabilities can have serious implications and is associated with depression, helplessness, hopelessness, and disruption of effective parenting. Research on other conditions which arguably have much clearer genetic origins than autism suggested that families may be at risk of experiencing guilt: for example, James et al. (2006) report maternal guilt to be common in X-linked condition.

Other the same time hand, the idea that the cause of autism is biological or genetics is, for many autistic people and their parents, a relief: nobody is “to blame” for the challenges that they experience. Seeing one's autism as a specific (genetic) “neurotype” leads, in many cases, to easier self-acceptance (Hens & Langenberg, 2018). But it is known that the environment can exacerbate or relieve the challenges associated with autism (Grabrucker, 2013; Tordjman et al., 2014; Mandy & Lai, 2016).

The increase in genetic research has raised concerns that labeling conditions as genetic will result in greater stigmatization of these conditions and of individuals who test positive for them. It is essential that research on the genetics of mental disorders is accompanied by social science research on the ways in which genetic findings influence the lives of those who are tested (Spriggs et al., 2008). According to Sankar et al. (2006), who conducted qualitative interviews with 86 individuals with one of four conditions: deafness or hearing loss, breast cancer, Sickle cell anemia, and cystic fibrosis; respondents report feeling stigmatized as a result of their condition; this stigmatization is not uniformly associated with the cause of the condition, whether genetic or otherwise. Instead, stigma emerges from a variety of sources in the context of the lived experience of a specific condition. James et al. (2006) conducted a study on guilt, stigma, and understanding of inheritance and reproductive risks in families with X-linked and autosomal recessive diseases, concluding that the level of stigmatization experienced was modest in both groups.

The stigma against autistic individuals in Brazil is a poorly studied topic, although there are significant concerns about discrimination. The 1988 Constitution and laws such as the Psychiatric Reform and the National Policy for Persons with Disabilities seek to guarantee rights for individuals with disabilities. The National Policy for the Rights of Persons with Autism Spectrum Disorder, approved in 2012, recognizes the rights of autistic individuals, aligning with the International Convention on the Rights of Persons with Disabilities (Araujo et al., 2024). The neurodiversity movement reinterprets autism, contributing to changes in attitudes toward autism globally. Its advocates oppose the idea of “cure” and promote the recognition of autism as an identity to be valued, advocating support for the thriving of autistic individuals. In Brazil, this movement began to gain traction early on, but there are few academic publications on the subject; a systematic review identified only eight articles in Portuguese by 2020 (Junior, 2023).

Understanding the perceptions of biological and environmental causes of autism has profound psychosocial repercussions, including challenges in communication and social interaction that can overwhelm caregivers and affect the overall quality of life of individuals with ASD. Therefore, understanding the interaction between these causes and their implications is crucial for developing effective interventions and support systems (Clarke et al., 2024). Little is known about how Brazilian people conceive the origins of autism. Therefore, this article aims to investigate how healthcare professionals, parents of young and adult autistic individuals, and young and adult autistic individuals perceive the origins of autism.

Materials and methods

Methods and findings were reported in accordance with the Consolidated Criteria for Reporting Qualitative Research (Tong et al., 2007). This article results from a larger research project funded by [details omitted for double-anonymized peer review] involving an international partnership between Brazil and the [details omitted for double-anonymized peer review] research project from Belgium. We interviewed healthcare professionals, as well as parents of young and adult autistic people and young and adult autistic people regarding their experiences with the diagnosis, with therapy, and with the perceived origins of autism and impact of presumed biological and environmental factors on autistic flourishing. In this paper, we report on the analysis pertaining to the latter topic.

Study environment

The study was conducted in the city of Itajaí, Santa Catarina, Brazil. Itajaí has a Specialized Center for Physical and Intellectual Rehabilitation (CER II), which is the place in the Itajaí Valley region where the family and autistic people are referred for diagnosis and treatment. Since 2014, around 900 autistic people have been through the service, and in the service of the Association of Parents and Friends of Autista (AMA), a charitable and nonprofit institution that offers care to autistic people and their families.

Ethical aspects

Ethical approval for this study was obtained from the ethics committee of the University of Valley of Itajaí (n° 5,395,458). All participants provided written informed consent before completing any study activities.

Participants

Eight health professionals who assist autistic people, five young autistic people, six family members of young autistic people (16–19 years old), five autistic adults (20–59 years old), and four parents of autistic adults participated in the research. They were recruited from CER II and AMA institutions. Those responsible for the services were informed of the research by a project researcher, and after authorizing the research, the participant was contacted to consent and participate in the research. No eligible participants withdrew or declined participation. Participants must be between 16 and 70 years old to be included, autistic adults and young people were required to have a self-reported autism diagnosis, parents of autistic young people and adults must be biological or adopted, and professionals must have at least one year of professional experience with autistic. To reduce the risk of identification, pseudonyms are used for the Professionals (P), Adult Autistic Participant (AAP), Young Autistic Participant (YAP), Adult Autistic Family (AAF), and Young Autistic Family Member (YAFM), Table 1 characterization of participants.

Table 1.

Characterization of participants.

Professionals	P1	P2	P3	P4	P5	P6	P7	P8
Age	54 years	60 years	26 years	26 years	45 years	27 years	30 years	24 years
Profession	Social Worker	Psychologist	Occupational Therapist	Speech Therapist	Nutritionist	Psychologist	Doctor	Physiotherapist
Length of experience working with autistic people	3 years	30 years	2 years	2 years	4 years	2 years and 6 months	1 year and 6 months	1 year
Young Autistic Participant	YAP1	YAP 2	YAP 3	YAP 4	YAP 5
Age	17 years	11 years	12 years	19 years	16 years
Gender	Female	Male	Male	Male	Male
Age at diagnosis	11 years	03 years	03 years	11 years	03 years
Who do you live with	Mother	Mother and father	Mother and brothers	Mother	Mother
Relatives with autism	Yes	Yes	No	No	No
Adult Autistic Participant	AAP1	AAP2	AAP3	AAP4	AAP5
Age	26 years	20 years	30 years	23 years	31 years
Gender	Female	Female	Male	Male	Male
Age at diagnosis	26 years	20 years	07 years	22 years	28 years
Who do you live with	Mother and father	Parents, grandfather, grandmother	Parents and brothers	Mother and father	Mother and brother
Marital status	Married	Single	Single	Single	Single
Do you have child	No	No	No	No	No
Relatives with autism	Yes	No	Yes	No	Yes
Young Autistic Family Member	YAFM 1	YAFM 2	YAFM 3	YAFM 4	YAFM 5	YAFM 6
Relatives	Mother	Mother	Mother	Mother	Father	Mother
Marital status	Single	Separate	Married	Married	Married	Married
Number of children	2	2	4	2	2	2
Children with autism	1	1	1	1	1	1
Autistic child's age	17years	12years	8 years	12 years	11 years	10 years
Gender of autistic child	Female	Male	Male	Male	Female	Male
Age at diagnosis	11 years	02 years	02 years	04 years	08 years	06 years
Adult Autistic Family	AAF1	AAF2	AAF3	AAF4
Parentage	Mother	Mother	Father	Mother
Marital status	Separate	Married	Separate	Married
Number of children	1	2	1	1
Children with autism	1	1	1	1
Autistic child's age	21 years	20 years	21 years	21 years
Gender of autistic child	Female	Female	Male	Male
Age at diagnosis	20 a years	15 years	5 years	2 years and 2 months

P: professionals; YAP: Young Autistic Participant; AAP: Adult Autistic Participant; YAFM: Young Autistic Family Member; AAF: Adult Autistic Family.

Source: Prepared by the authors.

Data collection

To characterize the sample, participants completed sociodemographic questionnaires. The data collection instruments involved vignettes as a starting point for conducting interviews with open-ended questions. We began the vignettes with the case of Mara, who has a son named Alex who experiences challenges related to social interactions with peers and repetitive behavior. The vignettes were the same for all participants and the stories explained Alex's behavior and associated genetic or environmental causes. Using these stories as a starting point, the interviewer asked participants about the causes of certain behavioral challenges that are often associated with autism. A semistructured interview with 34 questions was conducted with participants asking questions about relationships between possible causes and responsibilities, and about experiences regarding the diagnosis. The interviews were carried out at the convenience of the participants. They were carried out between June and December 2022, in a private room where only the interviewer and the interviewee were present, the duration was between 60 min and 80 min, and they were recorded on a voice recorder and later transcribed. Selected quotes were translated from Brazilian into English. The interviews were carried out by FC, CNB, and transcribed by JVAS.

Analysis

We inductively analyzed the data by applying the procedures outlined for interpretative phenomenological analysis (IPA). Briefly, IPA employs inductive analysis, based on the material, and, secondly, a dialogue of the resulting findings with existing theories. Interpretative phenomenological analysis seeks to understand the phenomena and different meanings of a lived experience, which stands out when trying to explore the meaning that experiences assume in the face of people's construction of meaning, understanding the world, and ways of acting. Experiences are directly relevant, seeking to understand how people give meaning to a certain set of experiences within their social world (Smith et al., 2009). Thus, the process of conducting IPA focuses on conducting in-depth interviews with a small number of participants and the researcher's objective is to find a reasonably homogeneous group with regard to a certain characteristic so that it is possible to evaluate the convergence and divergence between certain aspects in the experience lived by the research participants (Tombolato & Santos, 2020).

After the interviews were transcribed, the transcripts were systematically and inductively coded line by line in NVivo 11 (Richards, 2002). The objective was first to identify thematic excerpts of the text throughout the interview data. Consequently, a comparison was made between the interviews. The primary codes were grouped into recurring subthemes and synthesized into themes. All authors met regularly to discuss the interviews and codes.

Results

Two major coding themes emerged from the interviews that relate to the impact of several factors on the development of autism and autism-related challenges: (T1) Origins of autism: genetic, environmental, or both; (T2) The impact of the structured family environment.

(T1) Origins of autism: genetic, environmental, or both

Overall, the interviewees thought that the cause of autism is strongly related to genetics. In their statements, two reasons were identified for thinking this way: (1) genetics are hereditary/in the family; (2) scientific studies suggest the relationship between autism and genetics. At the same time, our respondents overall did not think that genetic origins automatically suggest that autism is bad to have.

Regarding the aspect of hereditary/familial genetic cause, participants express a tendency to observe characteristics of their own parents or family members as being equal to the behavioral characteristics or symptoms expressed by their children, as well as identifying the occurrence of having autistic children and also have had this happen in the family:

Genetics could be a cause to explain his behavior. Sometimes children are accompanied by their parents and they have the same characteristics (P1).

Autism can be mainly genetic, from a gene that came mainly from another person, from the family […] (AAP3).

She takes after her father. And since her father already had a report, she was just like her father. At 11 years old I knew, she was already different, we saw that she cried a lot. She liked to fight. When she was 11 years old, a school counselor caught my attention and asked “Mom, is your daughter autistic” (YAFM1).

Some of those interviewed based their arguments on explanations from scientific studies that they had come into contact with throughout their lives. This was a more prevalent report among autistic adults, who may have had more time living with autism and had greater opportunities to seek information in different media or contexts. Perhaps the understanding they had about the information accessed allowed them to reinforce or reaffirm their belief in genetic causes, a belief that may be prominent in cultural aspects or social representations of the environment in which they live. Such aspects can be highlighted in the following statements:

Studies today show that almost 99% of the cases are genetic. The biggest cause today is genetic. So I believe what the studies report, that genetic causes are one of the most common factors (AAF4).

There is research that says that 70% of autistic people have a genetic cause, where the father, grandfather, or someone in the family was autistic. And there will be about 30%, which are other factors, such as birth, drug use by the parents, things like that […] You need to know the mother's entire history for this genetic cause (AAP5).

You are born autistic, there is no cure because it is not a disease, but it is genetic, from what they have studied (AAP4).

This quote of a young autistic man suggests that even, or maybe because autism has a genetic origin, it is not that bad. This aspect may indicate that even with an understanding of the genetic cause and, therefore, without many perspectives or possibilities for changes regarding the symptoms or characteristics, challenges related to autism can be managed and should not be compared to something as more serious or more difficult to live with as it would be if it were a chronic illness, for example. This statement already indicates, therefore, a tendency to consider the impact of the environment even in prominently genetic causes.

Look, autism isn't that bad […] I think genetics, it's genetics! Genetics! (YAP2).

With regard to understanding the causes as coming from the environment or the interaction between genetics and the environment, in the interviews, professionals report that environmental experiences can influence behaviors:

Environmental experiences can exacerbate these behaviors. Not that persons become autistic due to environmental experiences and behaviors, but, based on the experiences they have, they start to exacerbate these characteristics, in one way or another. (P3)

[…] environmental changes have an influence on this change in his behavioral symptoms […] he is still autistic. The spectrum is very broad […] I think he was born autistic and depending on the environment, the environment, he starts to present one characteristic or another. (P3)

Young autistic people and also parents of young autistic people related the environment that the autistic person was exposed to and lived into changes in their behavior. Hence, even if the environment does not directly cause autism, the context in which autistic people participate and their experiences can generate changes and explain the reduction in symptoms expressed daily and throughout their development.

The environment in which “he lived,” the environment he was exposed to, the environment he lives in now, the environments he knows, the things he likes, his life experiences are what will define the person he is (YAFM3).

Because they need this well-structured, well-organized environment to give order to their world. It is not? (YAFM5).

Maybe since he was a child he had some characteristics, but not so big that they could interfere with his social life. However, when he grew up, his environment was not well structured, because it could have worsened the situation and made their limitations increase over time (YAP1).

This conception of different factors as causes of autism, such as influences from both environment and genetics, is highlighted in the statements by the autism professionals. At the same time, it is still possible to perceive some doubts and uncertainties regarding this influence in their statements:

I think this issue of genetics and autism is still a little, a little undefined. […], but we cannot point to this as the only cause, mainly because there are environmental situations (P7).

The environment may have had an influence, yes. But there are other things in between that also contribute (P4).

Family members of young autistic people and young autistic people believe that there is little influence between genetic and environmental causes and that genetic causes are predominant. It is also important to mention that, family members often express having searched for information in scientific literature about autism. Such information strongly stresses the influence of genetics, while the influence of the environment appears in smaller proportions in scientific explanations.

From what I’ve read, I studied autism. You still can’t say for sure that the environment is the cause, right? But genetics, I think you can even think that it may have an influence (YAFM3).

I think the innate genetic issue is the cause, that is, children are born with it, but they are very exposed to the environment […](YAFM5).

(T2) The impact of the structured family environment

Participants stated that a structured family environment, although it is not autism itself that is “cured” or “helped,” may promote well-being in people, changing behaviors or improving characteristics and symptoms.

[…] So if his family environment is structured and he has improved, then perhaps it is not a disorder or a disorder, he would still have autism (YAP1).

As explained previously, for the participants the main cause is genetic, the involvement of the environment or family environment can act as support in changing signs or symptoms over time. It does not directly imply the “elimination” or “cure” of autism. In the participants’ understanding, autism is fixed and what changes are behaviors or lifestyle habits.

Nobody knows how this family dealt with Alex, in this matter of his self-esteem […] nobody knows what made Alex so inhibited that he wouldn't let him communicate […]. It could have been that change (P1).

[…] the change in the environment is a primordial and essential part for a change to really happen, not only in Alex's life, but in any child who presents a communication problem or a change in behavior (P8).

Perhaps he had some autistic characteristics since he was a child, but not so great that they could interfere with his social life. However, when he grew up, his environment was not well structured, and this could have worsened his behavior and caused his limitations to increase over time (YAP1)

Professionals reinforce their roles in the importance of providing guidance to family members, as they know that a specific, often structured family environment can help tackle autism-related challenges.

[…] whoever guided this family to change the environment […] here, I think there was an intervention from someone working with this family and the family was able to help. Why this problem out of nowhere, did the family solve these problems? Someone guided. […] the family was responsible, but I think with the guidance of a professional (P1).

In guidance for parents, they begin to work on these issues at home. […] with care, monitoring with professionals (P2).

We know that some behaviors are reinforced by the family environment (P7).

Discussion

In this study, we investigated the perception of professionals, parents, and autistic people about the origins of autism in Brazil. We found that people thought that autism is strongly related to genetic factors and very little to environmental and social causes. Nonetheless, some professionals and parents of young autistic people consider that the causes of autism may include both genetic and environmental factors.

In English-speaking nations, there is a diversity of beliefs surrounding the etiology of autism. One study highlighted several causal explanations, including genetics, parenting, supernatural, and medical/chemical factors (Gulyn & Diaz-Asper, 2018). Participants included in this study were adults attending a mid-sized liberal arts community college in the United States, and those excluded were parents of a child with autism. Therefore, these beliefs are from adults attending an American college and not from parents of autistic children.

Brazilian publications reinforce the premise that the etiology of autism is complex, influenced by a multifactorial mechanism, which involves genetic and environmental factors (Evangelho et al., 2021). The relationship between several genes (polygenic) and environmental factors categorizes a multifactorial inheritance difficulty (Griesi-Oliveira & Sertié, 2017). Correa et al. (2021) carried out an integrative literature review on epigenetic changes in autism spectrum disorder and concluded that studies indicate that autism is characterized as a condition with multifactorial inheritance and that environmental factors, independent or in conjunction with epigenetic factors, increase the risk of this condition. Environmental factors do not act alone but are linked to a set of genetic factors that contribute to the emergence of this disorder in some people. Some molecular studies carried out have highlighted the role of epigenetics in brain development as a process susceptible to environmental influences, which are potential causes of this disorder (Coutinho & Bosso, 2015; Guedes & Tada, 2015).

The articles cited above and in others, report on the cause of autism being a combination of genetic and environmental paradigms. However, they still suggest a strongly positivist and biological thinking about autism.

Knowledge about the causes of autism in Brazil plays a crucial role in shaping the stigma associated with the condition, mainly due to social perceptions and the predominant medical model. This stigma affects not only individuals with autism but also their families and communities. A study by Araújo et al. (2023) indicates that the medical model is still the most commonly used in Brazilian research on inclusion, which may reinforce negative and distorted views about the differences presented by individuals with ASD. It is essential to include people with ASD and their families in the development of this research, promoting scientific practices that respect and are inspired by neurodiversity (Araújo et al., 2023). This approach often distorts the understanding and acceptance of neurodiversity. In contrast, the neurodiversity movement advocates for recognizing autism as part of human diversity, promoting acceptance, and reducing stigma. The study by Araújo et al. (2024) shows that knowledge about autism can reduce stigma, as participants reported greater understanding and decreased stigma after training on the condition, highlighting the importance of education in this process.

Although stigma regarding the causes of autism in Brazil is still poorly understood, several stakeholders have expressed serious concerns about discrimination against autistic people (Rios & Andrada, 2015). Parent groups and mental health professionals often seek to promote inclusion and combat this discrimination. By valuing autism as part of the identity of autistic people, parental advocacy initiatives are more aligned with the international neurodiversity movement. In contrast, some mental health professionals attempt to resist stigma by denying this identity as a disability. However, this distinction is simplistic, as some parent groups still advocate stigmatizing narratives in search of a “cure” for autism, while others, such as the Brazilian Association of Action for the Rights of People with Autism (ABRAÇA), promote the advocacy and autonomy of autistic people (Araújo et al., 2024).

We do not want to deny genetics, nor to disregard the potential relevance of genetic findings. Instead, we believe that merely reporting on environmental factors as biological determinants disassociates autistic people their sociocultural and historical context. This way of thinking corresponds to the naturalistic view of those who argue that the health/disease dichotomy must be explained based on objective and value-free definitions (Castañares et al., 2021). However, as becomes clear from the interviews, what may be more valuable to autistic people and their caregivers, is investigating how environments can enable autistic flourishing, rather than how they can answer questions regarding the origin of autism.

When, in this research, professionals and young autistic people suggest that an adequate and structured family environment, and environmental and social experiences can lead to changes in behavior, it can be said that they are consistent with the thinking of Georges Canguilhem et al. (2007). This author defined life as a polarized (or dynamic polarity) and normative activity, where the living organism is immersed in an environment that permanently fluctuates, which it evaluates spontaneously, reacting negatively or positively depending on whether the stimuli are adverse or favorable for its survival. As such, the individual cannot be separated from their internal and external environments, the internal environment of the organism and the interrelationships between its biological components, and another linked to the external environment in which it is immersed, “the patient must always be judged in function of the situation to which you are reacting and the instruments of action that your own environment offers you” (Canguilhem, 2007). Thus, apparently, strictly biological facts are, in reality, inseparably biological and social (Castañares et al., 2021).

In the history of autism, genetic discoveries have helped dispel the blame that fell on the so-called “refrigerator mothers.” In contemporary diagnostic practice, the notion of a biological diagnosis allows autistic individuals and their families to move beyond guilt. However, an overly simplistic approach to biology may end up ignoring the experiences and narratives of autistic people, prioritizing the search for causes and cures. Instead of viewing autistic individuals as having fundamental flaws in their genes or issues in their brains that need to be corrected, autism should be seen as a phenomenon that develops in interaction with context, representing a meaningful response to the environment (Hens & Goidsenhoven, 2018).

Families of autistic people are permeated with affective and emotional feelings that range from blame, overprotection, and stress. Such feelings force the family to make new changes in the lives and family dynamics of all members living under the same roof. These changes directly influence the autistic person in both positive and negative aspects (Freire & Seize, 2023). A structured or functional family increases the possibility of producing positive parental practices, offering the appropriate environment for the healthy development of the autistic person and consequently favoring the well-being and autonomy of the autistic person. A structured or functional family environment indicates an organization among its members in such a way that functions and structure are capable of producing healthy relationships and, therefore, can lead to development processes in accordance with the individual and family development cycle (Walsh, 2016).

When research participants report that environmental experiences, family, and social relationships influence the behavior of autistic people, there is an intention to style thinking from a more social and less biological perspective. That is, focused on the social model of disability and neurodiversity. The social model of disability can contribute significantly to rethinking the concept of disability and practices aimed at this population in various areas such as health, education, and psychology, among others. The term neurodiversity seeks to portray the diverse neurological constitution of human beings and seeks to offer social and health resources in favor of promoting quality of life not only from a biomedical point of view but also in relation to the environmental changes necessary to guarantee the coexistence and full inclusion of people with autism (Gesser et al., 2012).

However, it is important to emphasize that the neurodiversity movement is still not very widespread in Brazil. A literature review study conducted by Wuo et al. (2019) found that most studies are guided by the medical model and, among those that fall into the critical model category, the explanations span different theoretical approaches, such as phenomenology, historical–cultural psychology, and psychoanalysis. Analyzing the research revealed a multiplicity of narratives about autism and the perception that it is necessary to break with the medical model, guaranteeing recognition of the other as a subject of rights and social actor.

The medical model continues to be the most widely used to describe autism in Brazilian research related to education and inclusion, which can contribute to stigma and negative and distorted views of the differences presented by these individuals (Araujo et al., 2023). Studies indicate that greater knowledge about the diagnosis of autism is associated with a reduction in stigma among neurotypical individuals. Farugia (2009) analyzes interviews with parents of children diagnosed with ASD to investigate the stigmatization they face. Parents experience stigma but resist it by using medical knowledge. The research highlights how social control and the negotiation of subjectivity contribute to resistance to stigma, emphasizing the importance of medical knowledge within the autism community. In the United States, research such as that by Gillespie-Lynch et al. (2015) analyzed the perception, knowledge, accessibility, and stigma of university students in relation to their peers with autism. The results demonstrated that knowledge acquired through online training, developed by people with autism, can reduce stigma. This study was replicated by Obeid et al. (2015) in Lebanon, who found similar results, but with cultural particularities. Obeid et al. (2015) highlight that the conception and knowledge about ASD can vary depending on the country in which the person resides. This observation is in line with the statement by Siqueira and Cardoso (2011), who consider stigma as a social construction shaped by the culture and historical context in which “different” people are inserted, being stigmatized only within specific cultural contexts.

Although research on autism in Brazil from a social perspective is still in its infancy, it allows us to overcome the dichotomous logic that, based on discourses of biological origin, divides individuals into normal and abnormal individuals. Autism, from this point of view of the social perspective, is no longer seen from the perspective of deficit, impairment, disorder, assuming itself as a difference, like so many others that characterize the human race. Given this, the ideas of normality and abnormality, norm and deviation, difference and identity coproduce each other based on their own systems of meaning (Wuo, 2019).

Strengths and limitations

We admit that our study has several limitations. The main limitation was the difficulty in accessing family members of autistic adults and autistic adults to participate in data collection and the participant's understanding of the methodology. There may be some self-selection bias as those who were willing to participate may be more favorable towards science in general. Also, as the interviews were conducted in Brazilian, some nuances may have been lost in translating to English.

Conclusions

The study reveals that in Brazil, professionals, parents, and autistic individuals view autism primarily through a genetic perspective, with less emphasis on environmental and social influences. This is due to the strong emphasis in the scientific literature supporting the role of genetic factors. However, there is a growing recognition of the interaction between genetics and the environment, which supports a multifactorial approach. Despite this, the biomedical discourse still predominates, often neglecting sociocultural and environmental contexts. Moreover, participants also acknowledge that an adequate and structured family environment, that environmental and social experiences can lead to changes in behavior.

Footnotes

Acknowledgments

First and foremost,the authors would like to thank Dr.Kristien Hens for joining our Gevas/CNPq research group to her Neuro EpigenEthics research group who shared their knowledge and experiences.

Authors’ contributions

The authors would like to thank the contribution during the development of the research from the Center Specialized in Rehabilitation II and Association of Autistic Friends,including parents and professionals of autistic people and autistic people.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research,authorship,and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research,authorship,and/or publication of this article: This work was funded by ERC – CONFAP – CNPq 2020 call,CNPq Universal N° 18/2021,FAPESC ABROAD - International Cooperation in Science,Technology and Innovation and Bilateral Agreements/2021.

ORCID iD

Fabíola Hermes Chesani

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How do autistic people,professionals,and caregivers think about the origins and environments of autism

Abstract

Keywords

Introduction

Materials and methods

Study environment

Ethical aspects

Participants

Data collection

Analysis

Results

(T1) Origins of autism: genetic, environmental, or both

(T2) The impact of the structured family environment

Discussion

Strengths and limitations

Conclusions

Footnotes

Acknowledgments

Authors’ contributions

Declaration of conflicting interests

Funding

ORCID iD

References