Enacting autism: Immigrant family negotiations with nosology in practice

Abstract

This article describes how autism spectrum disorder is experienced in the context of immigrant families and how the meaning of this condition, proposed by professionals in the host country, is negotiated between families and healthcare providers. The study sample consists of 44 parents of different nationalities and their 35 children with autism spectrum disorder (ASD) living in a socioeconomically deprived neighborhood of Montreal, Canada. Individual parent interviews were audiotaped and transcribed for subsequent analysis. Results suggest that – although they may sometimes be a source of anxiety – the uncertainties regarding the etiology of ASD, as well as the gap between the explanatory models (EMs) proposed by host country professionals and the impressions of parents, seem to increase the capacity of families to resist the imposition of what they perceive as external categories. Parents perceived the day-to-day difficulties associated with their child's condition as a form of social exclusion that compromised their child's future and independence. These day-to-day difficulties were also described as directly affecting the parents' social life, constituting an important emotional and physical burden. When talking about their children, parents described the painfulness of their experiences, but also discussed how their autistic child had transformed and shaped their lives. Overall, these results show how the disease is “enacted” in the day-to-day life of parents; and suggest that such an embodied understanding of ASD may sometimes represent a form of re-appropriation of power by families faced with adversity.

Keywords

autism culture immigrants parents practice

Introduction

According to the biomedical classification, autism spectrum disorders (ASD) consist of a genetically and phenotypically heterogeneous group of neurodevelopmental disorders that involve persistent deficits in social communication and social interaction across multiple contexts, and restricted, repetitive patterns of behavior, interests or activities (State & Sestan, 2012). Their severity is based on the extent of impairments in social communication and of restricted, repetitive patterns of behavior. Symptoms are present in the early developmental period, but may not be fully manifest until social demands exceed the limited capacities of those affected. Alternatively, they may be masked by coping strategies learned later in life (American Psychiatric Association [APA], 2013). Early symptoms can initially be noted from the first months of life and impact the child's development (Jones & Klin, 2013; Apicella et al., 2013). According to the most recent biomedical explanatory models (EMs) of autism, the behavioral and cognitive symptoms of ASD are due to maldevelopment or injury to specific brain circuits that underlie behavior and cognition (Geschwind, 2011). Understanding the complex ASD phenotype requires integrating research on genetic vulnerability with combined exposure to environmental factors, such as infectious agents, pesticides, and ambient air pollutants, among others (Hertz-Picciotto, 2011).

In contrast with this biomedical conception, anthropological studies suggest that the set of signs and symptoms defined in psychiatry as ASD may not make sense outside of the medical environment. Some authors argue that dominant biomedical EM focuses unduly on symptoms, and fails to address the experience of living with autism (Solomon & Bagatell, 2010). Individuals with autism need to be viewed not only as having a biomedical condition, but as members of social groups who are capable of acting, and who display social competencies as well as difficulties in relation to socially and culturally imposed expectations of behavior (Ochs, Kremer-Sadlik, Sirota, & Solomon, 2004). Prince (2010), an anthropologist with ASD, published an ethnographic article that focuses on autism as a different way of being. Based on ethnographic data from the emerging autistic community that has grown over the past decade, Bagatell (2010) also considers the debate over whether autism is a medical condition in need of a cure or a way of life. According to representatives from the autistic community, behaviors such as repetitive movements and lack of eye contact need to be understood as a difference, and not as pathological behavior that needs to be changed. They conclude that autism, namely autistic symptoms, are part of who they are, not a problem that needs to be cured.

Various transcultural studies have been conducted with children with ASD in non-Western settings or in immigrant groups (Celestino, Pondé, Iriart, Machado Junior, & Serra, 2013; Gray, 1995; Nathan, 1985; Nathan, 2000; Sakoyan, 2005; Shyu, Tsai, & Tsai, 2010). Different EMs have been described, some focusing on traditional beliefs and others on biomedical categories. Gray (1995) describes how parents resort to explanations of a religious and psychological nature and reveals a difference between the parents' perspective and the biomedical perspective on autism. A study conducted in Taiwan by Shyu et al. (2010) found that, most commonly, the parents of children with ASD emphasize the medical etiology in their first contacts with the investigator, with reference to genetic causes being common. “Unnatural” or “supernatural” causes are mentioned only later, i.e., after achieving a greater degree of familiarity with the investigator. In a study conducted with parents of Caucasian American or Asian American origin and their children with ASD, Cho (2008) grouped parents' beliefs about the cause of ASD into four types. These were: 1) beliefs about genetic causes; 2) beliefs about environmental causes; 3) beliefs about a combination of genetic, environmental, and prenatal causes; and a small group of parents reported 4) having no idea what might have caused their child's ASD. In Yoruba populations in South Benin and Nigeria, children who fail to speak are referred to as Abikú (abi means to be born and kú means death) (Nathan, 2000). These children are considered capable of having privileged relationships with the ancestors and to be able to talk to them in an incomprehensible language (Nathan, 2000). In a study conducted in Brazil, the mothers' reference to organic causes of autism was a recurrent feature in the interviews, irrespective of education level (Celestino et al., 2013). However, the fact that the research data were collected by medical students may have had an impact on these findings. A study conducted by Sakoyan (2005) with immigrants in France suggests that the perception of the autistic child's problem by his/her mother is affected in a complex, sometimes contradictory way by the information published in the media, by the psychiatric context, and by knowledge from her original culture. In summary, these studies indicate that what comes up when we look for EMs is related not only to the subjects' and interviewers' beliefs, but also to the dialogical intersubjectivity between interviewers and interviewees, as well as the interviewees' needs and expectations.

The objective of the present paper is to analyze how autism spectrum disorder is experienced in the context of immigrants' families. It analyses both the parents' explicit EMs, within their context of expression, and how the parents construct and transmit their experience of ASD through the multiple ways in which their child's condition affects their lives. More specifically, it examines the relationship between the parents' discourse on ASD and the ways through which ASD is incorporated into the day-to-day life of individuals, both the autistic children and their families.

Methods

Sample and recruitment

The target population consisted of the parents of migrant children with autistic traits who had been referred to a primary care facility by professionals involved with the family, such as psycho-educators, speech therapists, social workers, pediatricians, or teachers. Parents were informed by professionals from the primary care facility about the study. A total of 44 parents were interviewed in the study: 32 mothers and 12 fathers. We included all parents that were referred and accepted to take part of the study. The parents originated from 33 different countries in Asia, Africa, Latin America and the Caribbean, Europe, the Arab world, and North America. Three parents were interested in the medical report resulting from the child's assessment (which was a benefit of the study) but did not agree to take part in the study, so they were excluded, but had their child assessed.

All procedures were in accordance with the ethical standards of the institutional research committee and the 1964 Helsinki declaration and its later amendments. The study was approved by the institute's Internal Review Board (Comitéd'éthique de la recherché CSSS de la Montagne – Site Métro) under protocol PE 569-16.04.09 on April 30, 2009. All the parents were provided with information regarding the study, both orally and in writing, and signed an informed consent form.

Instruments

Semi-structured interviews were conducted with the parents to elicit narratives regarding the family's experience with their child's difficulties. Interviews were conducted by a Brazilian psychiatrist in English, French, Spanish, or Portuguese. For other languages, an interpreter was present. Parents were interviewed individually without the presence of the child or their spouse. The duration of the interviews with the parents ranged from 45 minutes to two hours. In the semi-structured interview, the following questions were asked: “How do you view your child?”; “Does he/she have any problems/difficulties?”; “What kind of problems/difficulties?”; “What has caused your child's problems/difficulties?”; “How is your child's problem affecting his/her life?”; “How does your child's problem affect your life?”; and “What is your greatest concern regarding your child?”. The questions were triggers, and most of the parents spoke spontaneously after being questioned without interruption. The interviews were audiotaped and transcribed for subsequent analysis.

Data analysis

Domain analysis, a method developed to analyze ethnographic data, was used to analyze the interviews (Spradley, 1980; Pondé, Mendonça & Caroso, 2009; Pondé & Rousseau, 2013). The first step was to identify semantic relationships between terms in the parents' narratives. The following universal semantic relationships, as proposed by Spradley (1980), appeared in the interviews: cause and effect (X is caused by Y). For example: “child's problems” are caused by “environmental factors”, “biological factors”; “child's problems” cause “… in child's life”; and “child's problems” cause “… in parent's and families' life”. The second step was to prepare a worksheet listing the semantic relationships, including a declaration of the form in which they were expressed, and examples taken from each narrative. The examples from each narrative, which correspond to fragments from parents' narratives, were regrouped into categories.

Results

The examples from each narrative, which correspond to fragments from parents' narratives, were regrouped into categories. These categories were subsequently reduced to three major categories: a) what the parents of autistic children perceive as causing their child's problems; b) how the child's difficulties interfered with his/her daily routine; and c) how the child's difficulties interfered in parents' and families' life.

What parents of autistic children perceive as causing their child's problems

Four categories relevant to what the parents of autistic children perceive as causing their child's problems emerged from the interviews: environmental factors, including issues related to immigration; biological factors; supernatural beliefs; and some believed that their child had no problem at all.

1) Environmental factors. In an effort to understand what caused their child's problem, immigrant parents often mentioned environmental factors. One of the environmental factors most often mentioned was a lack of stimulation from the parents themselves (the parents blamed themselves for not stimulating the child enough because they have to spend much of their time working). Some parents also blamed themselves for pushing the child too hard to speak or for doing everything for him/her (“I spoiled my kid”). They also mentioned problems associated with negative pressure from the teachers at school and the lack of contact with other children. Another issue often mentioned was the mother passing on her stress to her child through her milk when breastfeeding:

“When we are stressed, there are things that get into the milk. I don't know, but that is what our mothers think. […] So, maybe with the stress, they say we shouldn't breastfeed.”

The parents also believed that environmental factors related to immigration could be contributing towards their child's ASD-related problems. They thought that the child's development had been delayed because he/she was exposed to different languages as a function of his/her parents' immigration. The fact that they were exposed to a bilingual environment (French and English) in Canada was flagged as an additional aggravating factor. Difficulties with respect to discrimination against foreigners and to life in Canada, both with respect to climatic and social issues, were noted as additional factors. Restrictions in the daily routine of families who were confined to their homes in winter due to snow provided little stimulation for the children, who ended up spending large amounts of time watching television. The families felt isolated, with few friends and few contacts; the stress of immigration depressed the parents, which had an impact on the child. Lack of support for the mother, in particular, meant that she was less able to attend to her child; this was not an issue in their country of origin, where they had family and/or servants who routinely helped with the day-to-day difficulties of having a child with autism.

“We had to travel […] when she was two I had to travel and her dad wasn't there anymore and I was travelling to a lot of places with her, to different countries and then the third place I came to was Canada. So maybe it kind of made her come out (chuckle) or more clearly it triggered something. […] I think she has good potential and she was really confused with my travelling and different languages. Maybe it affected her; maybe she would have been a little better, still autistic, but maybe a little better.”

2) Biological factors, such as problems during pregnancy, inherited genetic family traits, or prematurity were also mentioned frequently, as were physiological problems in the brain, the use of vaccines (many parents commented that after arriving in Canada they often heard about an association between autism and vaccines), family traits, and the use of pharmaceutical drugs during pregnancy.

“I know that with premature children what often happens is autism or development problems, cerebral palsy or something of this kind.”

“Some people say that maybe it is a problem associated with vaccines because they say that there is a vaccine that does this: lots of children are like this, according to what people say. I don't know what vaccine. There's a vaccine, here in Canada.”

3) Supernatural factors. There were also explanations associated with supernatural beliefs suggesting that the disease could be caused by divine intervention.

“It was God, He sent children like this.”

“Two things: one, if it is in the family and somebody has it, that must be autism, but the other cause is that God gave it. We don't have anyone like this in the family. I have a brother who is dumb, he never talked but it is not the same thing. […] Because God acts like that. Some people don't talk. They don't do it; this comes from God. […] God created this world with different people. I could have been a dog or a cow or a cat. […] As I told you I am a bit religious.”

4) Normalization. For some parents, their child had no problem at all. They mentioned only positive things about their child, clearly contradicting what they were being told about their child by speech therapists, psycho-educators, social workers, or the school that had referred the child for evaluation.

“I see him as a normal kid. […] Last year at school, they said he did not communicate much with the other kids. […] The teacher also told me that he is a very smart kid. Sometimes they say he is very quiet and I asked my son “why are you so quiet?” and he said “because sometimes I want to be alone to think and especially because the girls talk too much. But I play with them; I always play with the other kids.”

How the child's difficulties interfered with his/her daily routine

The day-to-day difficulties as perceived by the parents of children with ASD suggested an embodied understanding of the disorder, in other words the parents explained how living with their child's symptoms invaded their children's lives and interfered with their daily routines. Through their narratives, parents revealed their anguish, frustrations, and expectations with respect to their children. Three major categories emerged: 1) it hampered the child's social life; 2) social exclusion; and 3) the child's future and independence were compromised.

It negatively affects the child's social life

The majority of parents considered that the social interactions of their autistic children were hampered by a lack of certain social skills or a deficiency in these skills. These include difficulties in communication, difficulties in interaction with and a lack of interest in other children, as well as difficulties in learning and in defending him/herself. Parents of children under six years of age who did not speak were concerned mainly with the acquisition of language, but maintained the expectation that their child would talk and that, when he/she did, all the problems currently faced by the child would be resolved. The difficulty in communication concerned the parents since they believed that “society does not accept people who do not speak”, because “there are routine things such as speaking on the telephone that she cannot do” and because the absence of language may generate a major difficulties in social adaptation and may even lead to rejection by the child's peers. For the parents of children who were verbal, in general those over six years of age, the difficulty in communication was described as an inability to clearly express themselves verbally or to make their feelings clear. The children's lack of communication generated a sense of impotence in their parents, since, in addition to not expressing themselves verbally, there were no non-verbal compensatory mechanisms to help the child transmit his/her desires and needs. The parents described their feelings of impotence and frustration at not being able to understand their children.

“We don't understand what he wants. He cries and we don't know why he is crying. What does he want? We don't know. We ask him: ‘Do you want this?’ This is a problem for us. He is trying to tell us he wants something but we don't know what he wants.”

This quote suggests that the parents are mobilized by the symptoms of the disorder: the symptom is the problem itself. Since they were unable to manage their child's day-to-day life, they believed that they were unable to care for them and satisfy his/her needs.

Concerned with the lack of social skills, parents referred to difficulties in socializing, with a consequent lack of friendship and constant loneliness, learning difficulties and an inability to follow collective rhythms in school activities. The parents described difficulties with concentration and emphasized how their children need specialized academic attention, including teaching methodologies that cater to their particular needs. Collective life itself was another reason for concern, since, in their interactions with their peers, these children lacked the necessary skills to defend themselves from physical or moral aggression. Deficits in the ability to perceive danger was an additional concern for the parents: “He runs out into the road; he has no idea he could be run over.”

Social exclusion

Many parents recounted how their children suffered appalling social exclusion because of their lack of social skills, their delayed development (retardation), and/or because of their behavioral problems. The children were rejected by their peers as a consequence of their characteristics: because they did not talk; because they were aggressive (they would hit their classmates or fight with them instead of playing); and because they were often slow and unable to understand other children's games. As part of the rejection process, the child may be bullied at school; therefore, the parents often considered social environments to be inappropriate places for their children. In addition, some parents mentioned that the child was not accepted in common social spaces such as daycare and schools, with the educators claiming that they did not have the necessary skills to deal with a child like this.

The child's future and independence were compromised

The difficulties were also projected into the future, causing concern about the child's future possibilities in terms of employment and achieving financial independence. The disability was located in various places, according to several possible scenarios. Many of the parents, for example, considered their old age and death to represent the end of a relationship that is vital for their autistic child, who is (in general) completely dependent. Of the concerns expressed in their statements, their principal preoccupation was with respect to their child who, in addition to not achieving his/her independence, will not be able to start a family, have a satisfying emotional life, or be able to deal with ordinary day-to-day problems in his/her adult life. This subject was very much present in the statements made by the parents of older children, with the parents of children with severe behavioral problems being the most concerned regarding their child's future.

The father of a highly agitated, aggressive child emphasized his concern regarding his child's disruptive behavior, while also revealing his search for a pharmaceutical treatment that might result in an improvement. In his statement, this search for help is implicit.

“But his future; I can't see any future for him at this point because he can't even go to the washroom; he cannot communicate. So there is no future for him unless something happens or there is some type of medication that we can get him on that will maybe help his future. […] Some people may call me an asshole for saying that, but it is the truth, let's not lie. If we do not start him on medication to calm him down, to start communicating, start expressing himself, he is going to be like that for the rest of his life.”

By agreeing to take part in the study, the parents knew that they would have the opportunity to consult with a psychiatrist; therefore, in the parents' statements, the expectation is clear regarding the possibility of an improvement in the child with the help of the psychiatrist in charge of the study. It should be emphasized that when they were invited to participate in the study, the parents were advised that they could ask the investigator about possible drugs and for a medical report to enable the child to be enrolled in programs aimed at children with ASD.

ASD affecting the life of the parents and families

The parents provided the investigator with statements on how the disease acts in peoples' daily life within different contexts (at school, in therapy, within the family, etc.). The presence of an autistic child affects the parents' lives and that of the family as a whole. Some parents said that “the entire family has become autistic.” ASD acts in various contexts in family life, draining the parents both physically and emotionally. The families' social lives were affected, with difficulties also being reflected in the economic sphere and in the parents' lack of personal care, since they were constantly focused on their child's needs. Consequently, feelings of frustration and impotence at the child's failings and his/her emotional block emerged. In fact, the condition is enacted in multiple situations and processes (e.g., the household budget, disappointments, lack of personal time and of any emotional feedback from the child, concerns about the diagnosis, etc.), and that are articulated with constantly re-evaluated practices. These material and emotional impacts that arise from ASD in parents and children's life, were the dimensions of experience most often present in the statements made by the families. Five major categories emerged from narratives: 1) the parents' social life is affected; 2) the emotional and physical burden; 3) parents' individuality is always very much affected; 4) frustration because of the lack of emotional feedback from the child; and 5) the medical diagnosis.

The parents' social life is affected

Parents described feelings of embarrassment in relation to their child's disruptive behavior in front of other people. In public places, this behavior bothers them even more, embarrassing them and making them feel judged. Indeed, the child who behaves aggressively creates an impression of being badly behaved; and in their reports, the parents state that they perceive the disapproval of other adults from the way they look at them. In addition to this moral discomfort, the child's agitation may result in a need to interfere with parenting to help the parent control their child, which also leads to embarrassment. There is also a daily embarrassment with respect to the neighbors, since the noise that a child with ASD usually makes is often a cause for complaint.

Emotional and physical burden

Parents complain of the emotional and physical burden of having a child with ASD, since they have to repeat the same command many times before the child responds appropriately. The child appears not to understand and strongly resists doing the simplest of routine tasks; for example, they may have no sphincter control and may need frequent diaper changes. In addition, their agitated and disruptive behavior is physically tiring. Sometimes the parents feel that their child's demands are excessive. When the child's development is significantly delayed, the parents spend a considerable amount of energy teaching them simple tasks, which leads to frustration, since the child appears not to learn. The parents complain that they are under pressure from all sides: the school puts pressure on them, the healthcare professionals put pressure on them, and the child makes demands. Many parents complain because their child does not sleep, which also prevents them from sleeping, leading to states of extreme exhaustion.

“It is just physically exhausting. With sleeping problems and reading and doing the training exercises over and over again and working on eye contact, it doesn't come naturally to us. […] No, it is just mostly the physical aspects for me. She is taking more and more time and not sleeping well and my schedule is never the way I want it to be.”

Parents' individuality is always very much affected

The parents spend a lot of energy on their child, so there is little time left over for them to take care of their own lives, hobbies, and occupations. According to most of the mothers, the time spent taking care of their autistic child leaves them with no time left over to take care of themselves, to prepare themselves professionally or for leisure activities. There is often not even enough time to take care of their own health. Many of the parents are recent immigrants and for this reason feel under even more pressure because they need to get a job, but, at the same time, their child is extremely demanding. Therefore, these parents complain that they do not have time to spend looking for a job or training professionally. Others confess to feeling guilty at not being able to dedicate more time to their child because they have to work.

“I need to try to find a good job and to get a good job I need to prepare myself, like career preparation. If they do not improve quickly, it will affect my career life and it will affect them again because the family finances are also very important for the family. If I cannot get a good job, I cannot buy a house for them so this is a vicious circle.”

“I am an artist. Before, I would often give exhibitions. I took part in lots of projects. I had many ideas to develop. […] Now it is very, very difficult to stop thinking about my daughter. […] It is almost impossible to develop a project of my own.”

Frustration because of the lack of emotional feedback from the child

Many of the parents reveal feelings of impotence with respect to their child's problem. The child's suffering appears to them to be perpetual, while, at the same time, they are unable to comprehend his/her suffering. They are unable to console the child, since they do not even know what he/she wants or what is making him/her suffer. Some parents resent the fact that the investment that they make in their children gives them no returns, either in the form of emotional feedback or with respect to the child's progress. The child does not change. There is no feedback, only demands that continue throughout his/her entire life.

Medical diagnosis

One of the mothers expressed her discomfort with the medical concept of the disease, specifically with the diagnosis. She perceived the diagnosis of autism as obliterating her son's identity. It was as if the diagnosis obliged people to see her child in a preestablished form, leaving no space for him to have an identity of his own.

“When I saw about this, I thought it would mean that the child I know today who does what he does – lining up toys, visual contact – all of these were symptoms, they weren't my son. Do you see? That's how I felt; so who is my son? That was just a list of symptoms. I cried because I finally thought that not even I know who this child is that I have brought up. I finally ended up seeing that, yes, he is autistic, but he is also a child. He has his own personality too […]. It's not a question of being ashamed, it's more a question of me not wanting that label. Because my son has a name – ‘Esdras’. For example, if I tell someone that my son is autistic, the first thing that will come to that person's mind is not ‘Esdras’ but autism.”

This preceding paragraph describes the effect of the depersonalization of biomedicine in a subject that is already asocial. It concerns the double effect of an individual's alienation. In this case, the mother implicitly points to the difference between an individual and a person: in biomedicine the “individual” is the subject disassociated from his/her relationships, including family relationships. On the other hand, the “person” is defined in relation to, and exists in, the context of his/her relationships with others (family relationships, relationships with others in daily life, neighbors, etc.). In the majority of cases, the child with ASD lives with his/her family. The statement made by the mother of ‘Esdras’ (not his real name) reveals the inadequateness between the notions of the individual and the organism of biomedicine and the person perceived by the parents. Awareness of the child's disease, mentioned in the final segment, shows how the person of the child is recovered in contrast with the condemnation of the child's unbearable alienation, isolated within his symptoms (she says that she likes to ask herself: “Who is this boy?” “He is not simply the sum of his symptoms […] he has his own personality”).

Discussion

Biomedicine diagnoses and treats the disease, which is defined as an abnormality in the structure and function of the organs or systems. On the other hand, the patient suffers from the illness, which is understood as the experience of a change in the state of being and in his/her social functioning, a subjective experience that converges with the specific cultural horizons of the patient (Kleinman, Eisenberg, & Good, 2006). They are considered in two contrasting ways; one reduces them to biological phenomena within the explanatory purview of biomedicine; the other adopts a sociocultural interpretation of the disease, a task for the social sciences.

This polarization has been questioned (Mol, 2002). To cast disease and illness as separate realities, in which one takes precedence over the other, dichotomizes our comprehension of the phenomenon of becoming ill. Illness experience is not a question of pregiven facts that interact only after they are formed, but of inseparable dimensions. Rather than being two ontologically independent domains or totalities given a priori, the realities of illness and disease are born alongside each other, emerge from each other, and act together (Mol, 2002). Displacing the focus of studies from systems with essentialized meanings to practices offers an alternative to overcome the traditional dichotomies up to a point at which it is considered that no totalities are formed a priori, but, rather, pursued within a field of action.

This notion of action is advanced in the concept of enactment central to the work of Mol (2002), who moved beyond the classic epistemology of biomedicine to observe in the various actions and reactions of subjects and objects, a multiple ontology of disease (in the sense of disease). Mol situates pathology within the complex process of daily practices and does not deconstruct disease in terms of an already known entity (as a fact of biomedical knowledge), but multiplies its reality, as elaborated through a series of practices that include the production of images, conversations between doctors and patients, patients' lives. In so doing, Mol (2002) tries to recover the eclipsed relational contexts that permit the emergence of the disease beyond its scientific essence. She achieves this aim by following the disease at various moments, tracing the actors, materialities, and events that constitute the affliction. Applying this perspective, we argue here that autism exists in various places since its concreteness is found in the relationships that engage or employ it. Following the steps suggested by Mol (2002), who emphasizes the materialities, events, and relational processes, we suggest that ASD can be understood in terms of what is done by patients, families, and clinicians in practice.

Analysis of parents' interviews suggests that the investigation of the representations of suffering, captured through the concept of EM, should be enlarged. We should move from a focus on “meaning” to a focus on “practices” as a means of defining understanding of the experienced disorder. Thus, parents discussed the difficulties they faced with their children and the difficulties their children encountered with respect to how the disorder was enacted, based on the combination of a series of heterogeneous elements (objects, meanings, forms of confrontation). The disorder or the disability of ASD can therefore be partially defined by the different forms of embodiment that activate it empirically. Indeed, we argue that the views of ASD proposed by the parents result from the multiple actions that they have to perform and roles they have to play in their complex struggle with the symptoms of ASD. These practices also enable them, on the basis of their experience, to renegotiate the meaning proposed by professionals in the host country.

In the statements of the parents of children with ASD, it is clear that a complex web of heterogeneous elements is being spun and enacted mutually. In the configurations seen as such, the relationships between the parents and the psychiatrist or the educators are as relevant as the articles on the Internet, interactions with friends, or the experience of a child living with a pet at home. Instead of treating these dimensions as peripheral to the study, and insisting on seeing only the eventual intersubjective representations or sociocultural models that transcend the day-to-day suffering, we considered the possibility that they may make up a network of relationships, i.e., a plurality of undetermined and multiple interactions between bodies, worlds and signs. In the situation of distress experienced by any one of the individuals closely connected to children diagnosed with ASD, it is possible to perceive the enormous effort made to maintain daily life within the parameters of normality. A series of resources are mobilized to help guarantee the success of this project: medication, psychiatric treatment and psychological therapy, research on the internet, journal articles, and support groups. The disease introduces a series of tensions: between maintaining hope and ceasing to believe in a treatment, between confronting discrimination and giving in to exclusion, between pursuing all the strategies that might represent an improvement and giving in to feelings of sadness. In the day-to-day routine, these tensions cannot be avoided; they need to be permanently evaluated and negotiated.

Reviewing the literature, we find that many authors have pursued symbolic representations of autism that took specific cultural models as references. Nathan (2000), for example, used the description “ancestral children”, which are prisoners in the world of the dead. Other authors (Celestino et al., 2013; Cho, 2008; Gray, 1995; Sakoyan, 2005; Shyu et al., 2010), who are associated with different fields of research, studied the narratives of parents of autistic children on illness representations and found that these parents mainly made reference to biological and environmental factors. The empirical material of the present study on EMs reveals that environmental causes (including issues related to immigration) and biological causes were often mentioned as being associated with the child's problem, while spiritual causes were less often at the forefront. In a similar study, conducted in the same neighborhood as the present study with North African mothers of autistic children, the parents' EMs were different, in that all of them offered some form of spiritual explanation and a significant number were using traditional forms of healing together with Western biomedicine (Ben-Cheikh & Rousseau, 2014). There are two important differences between the two studies. First, parents in the present study were told that the research team would provide them with a medical report that would give their children access to facilities for autistic children within the Montreal Healthcare System (a speech therapist, pharmacological treatment and special classes at school) even if they refused to participate in the study itself. Second, although the interviewers consisted of female psychiatrists in both studies, in the present study the interviewer was from Brazil and her mother tongue is Portuguese. She interviewed the families (whose native language in many cases was neither English nor French) either in English or French; while in the study conducted by Ben-Cheikh & Rousseau (2014) the interviewer was Tunisian and she shared the same native language as the participants she interviewed. This strongly suggests that semi-structured interviews are dialogical processes that need to be situated within the context of specific interactions, facilitating the sharing of some meanings and silencing others.

Nevertheless, what the parents' statements show most strikingly is the different forms in which autism acts, depending on the space and the moment (therapeutic, family, biomedical, school, street). Looking for narratives on suffering, we find implicit descriptions of processes in which the practical dimension of the disease acquires an epistemological and ontological status: it is within this context of varying enactments in the day-to-day routine that the disease is known; hence, that it acquires its own reality and existence. By seeking EMs of ASD in the parents' narratives, we are immersing ourselves in the day-to-day life of families who face a series of questions related to the particular characteristics of their children with ASD. Analysis of the narratives led us to adopt a perspective that subverts the epistemological tradition of looking for representations elaborated in the minds of subjects who can speak for themselves (the suffering) about something that is already objectified and represented (the disease or disability). Instead, the narratives led us to locate activities, events, practical difficulties, pedagogical procedures, etc. The suffering and the emotions already are, right from their emergence, part of the disease that the parents are getting to know and construct. The disease (ASD) consists of a certain way of being that develops with the processes of daily life, leaving no space in which to separate the subjective dimension from mere happenings. ASD cannot be considered an entity represented in any definitive form, because there are diverse elements that must be processed; hence our investigation consisted, in fact, exploring how parents and children with ASD draft their knowledge of the disorder by incorporating evidence from events and daily activities.

Conclusion

The accounts of parents in this study show how the ways of dealing with ASD, the strategies that each individual uses, produce a range of different negotiations. Autism is altered as a function of daily effort to articulate experience that is negotiated among patients, families, clinicians and others. In each of these negotiations, suffering may be transformed. The space in which this negotiation occurs, the settings, interactions, teaching materials used, solutions found, metaphors deployed to explain emotions, and the studies and research evidence disseminated on the Internet or through scientific papers on ASD, all provide elements that influence parents' courses of therapeutic action. The affective quality of family life is changed by autism. We have shown, for example, how the disease can remain “invisible” within domestic settings (as in the case of parents who say that their child has no problem, that he/she is only “different”, not “sick”), but social interactions may reveal the persistent relational dimension of ASD. Thus, teachers or educators call the parents in and enquire about the child's behavior, prompting the parents to seek medical evaluation and specific services for individuals with ASD. What the parents talked about was the dimension of ASD as a reality within their practices. It is in the day-to-day routine that we are able to grasp how ASD is enacted. When parents talk about their children, they describe not only their ideas about ASD or their experiences of suffering, but they also reveal how profoundly ASD penetrates into their lives and changes their families.

Footnotes

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.

Ethical approval

Research involving human participants: The study was approved by the institute’s Internal Review Board (Comité d’éthique de la recherché CSSS de la Montagne – Site Métro) under protocol PE 569-16.04.09 on April 30, 2009.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was part of the postdoctoral work carried out by the first author and financially supported by the Bahia State Research Foundation (FAPESB), Grant # 0086/2009.

Informed consent

All the participating parents were duly informed with respect to the study, both orally and in writing, and signed an informed consent form.

Milena Pereira Pondé, MD is Professor at Bahia School of Medicine and Public Health (BAHIANA) in Brazil. She coordinates the Interdisciplinary Laboratory of Autism Research (LABIRINTO), where she does clinical research involving patients with autism spectrum disorder and their parents, and supervises trainees in psychology and residents in psychiatry. She holds Master’s and PhD degrees in Public Health, is a Fellow in the Division of Social and Cultural Psychiatry at McGill University, and has worked as a clinical psychiatrist since 1990.

Francesca Maria Niccoletta Bassi Arcand is Professor of the Federal University of Recôncavo da Bahia (UFRB) and is affiliated with the Center for Culture, Languages and Technologies (CECULT). She holds a Master’s degree in Social Sciences from La Sapienza Università degli Studi di Roma (1993), and a PhD in Anthropology from Université de Montréal (2009). She works in anthropology, with an emphasis on the anthropology of religion, theories of ritual, anthropology of the body, and the anthropology of dance. Her current work focuses on religiosities, therapeutic knowledge, theories of myth and ritual, ethnography of Afro-Brazilian religions, ethnography of parties, and memory transmission.

Litza Andrade Cunha holds a PhD in Social Sciences, and is Adjunct Professor and Researcher at the Institute of Collective Health (ISC) at the Federal University of Bahia (UFBA). Her current work is situated in the field of Medical Anthropology, specifically focusing on mental health. She is also a Member of the Social Sciences in Health Research Group (ECSAS/UFBA).

Dr. Cécile Rousseau, MD, is Professor of Psychiatry at McGill University and Scientific Director of the Research Institute on Health and Cultural Diversity SHERPA. She has worked extensively with immigrant and refugee communities, developing specific school-based interventions and leading policy-oriented research. Presently, her research focuses on the evaluation of collaborative mental health care models for youth in multiethnic neighborhoods and on intervention and prevention programs to address youth radicalization.

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