Family and Fraternal Relationships: Conceptions of Mothers, Siblings and Adolescents with Autism

Família e Relações Fraternas: Concepções de Mães, Irmãos e Adolescentes com Autismo

Familia y Relaciones Fraternales: Concepciones de Madres, Hermanos y Adolescentes con Autismo

Abstract:

This descriptive and exploratory study aimed to analyze the conceptions of mothers, siblings and adolescents with autism based on the family aspect, the maternal experience and the fraternal relationships. Semi-structured interviews were carried out with 12 mothers (between 33 and 50 years old), 15 siblings with typical development (between four and 16 years old) and two adolescents with autism (aged 11 and 13 years old). The results were analyzed using content analysis, and the conceptions of process, person, context and time of the bioecological model were considered. The participants showed similar family conceptions. The mothers expressed the need to distinguish between typical and atypical motherhood. The siblings characterized their relationship experience as good, although those with autism prefer to play alone. It is expected to contribute to the implementation of interventions and public policies that consider the entire family and not just the person with autism.

Keywords:
autistim spectrum disorder; family relationships; siblings; motherhood; adolescents

Resumo:

Este estudo, de caráter descritivo e exploratório, teve como objetivo analisar as concepções de mães, irmãos e adolescentes com autismo a respeito da família, da experiência materna e das relações fraternas. Foram realizadas entrevistas semiestruturadas com 12 mães (entre 33 e 50 anos), 15 irmãos com desenvolvimento típico (entre quatro e 16 anos) e dois adolescentes com autismo (com 11 e 13 anos). Os resultados foram analisados por meio da análise de conteúdo considerando os conceitos “processo”, “pessoa”, “contexto” e “tempo” do modelo bioecológico. Os participantes demonstraram semelhanças entre as concepções sobre família. As mães manifestaram necessidade de diferenciar a maternidade típica e a atípica. Os irmãos caracterizaram suas relações pela boa convivência, embora aqueles com autismo prefiram brincar sozinhos. Espera-se contribuir para a realização de intervenções e políticas públicas que considerem toda a família e não apenas a pessoa com autismo.

Palavras-chave:
transtorno do espectro autista; relações familiares; maternidade; irmãos; adolescentes

Resumen:

Este estudio, de carácter descriptivo y exploratorio, tuvo como objetivo analizar las concepciones de madres, hermanos y adolescentes con autismo a respecto de la familia, la experiencia materna y las relaciones fraternales. Se realizaron entrevistas semiestructuradas con 12 madres (entre 33 y 50 años), 15 hermanos con desarrollo típico (entre cuatro y 16 años) y dos adolescentes con autismo (con 11 y 13 años). Los resultados fueron analizados por medio del análisis de contenido considerando los conceptos “proceso”, “persona”, “contexto” y “tiempo” del modelo bioecológico. Los participantes demostraron semejanzas entre las concepciones sobre familia. Las madres manifestaron necesidad de diferenciar la maternidad típica y la atípica. Los hermanos caracterizaron sus relaciones por la buena convivencia, pese a que aquellos con autismo prefieran jugar solos. Se espera contribuir con la realización de intervenciones y políticas públicas que consideren a toda la familia y no apenas a la persona con autismo.

Palabras clave:
trastorno del espectro autista; relaciones familiares; maternidad; hermanos; adolescentes

The bioecological model was chosen as a theoretical framework due to its relevance in the study of families. Bronfenbrenner ( 1986 ) conducted a review study on empirical research and highlighted the influence of environments on family functioning. He emphasized the relationship between the parents’ education level, their educational practices, and their perceptions about the child. Additionally, he criticized research projects carried out at the time, which disregarded what people did, how they lived, and how their activities could affect the development process. According to the author, family processes change over the years and are influenced by the contexts in which families are inserted, a fact that demanded new research perspectives.

This model offers a systemic view of the phenomena studied by analyzing aspects of the person, the environment in which they live, and the interactive processes that affect them over time. For Bronfenbrenner ( 1996 ), development occurs through interinfluences between the dimensions of ‘process’, ‘person’, ‘context’, and ‘time’ (PPCT). The person dimension refers to individual biopsychological attributes or the family group as a relational unit. The context is understood in the physical, social, and cultural terms where interactions take place. Processes involve the interactions, considered as drivers of development, and time encompasses historical matters, stages of development over the life cycle, and specific intervals over days, years, or generations.

From this perspective, the family is a context that includes experiences, relationships and meanings that are internalized according to the contexts in which people are inserted (Bronfenbrenner & Evans, 2000 ). Based on the PPCT dimensions, it is argued that each family is made up of specific social, value and physical aspects that impact its members throughout their lives. Thus, the family consists of a system that promotes development, whose relationships are permeated by reciprocal, direct and lasting influences between its members, and the conceptions about the family, its members and their relationships are essential elements for its understanding.

Given the plurality regarding the concept of family and the ambivalence of its role in the development of individuals, it is worth noting that it can be associated with both the expression of care, tenderness, and affection, and aggressiveness, neglect, and abandonment. In this regard, Lemos and Salomão ( 2022 ) and Melo et al. ( 2023 ), in light of the bioecological model, argue that the family can be both a protective and a risk factor, depending on the context, the related processes, and the meanings attributed by the individual. Other variabilities observed in this concept include different family configurations, the redefinition of roles and interactions between its members, and the participation of people beyond blood ties. These people are regarded as extended family, which is characterized as a support network and they play a notable role supported by affective relationships of mutual help (Cardoso et al., 2020 ; Landim et al., 2020 ; Ribeiro & Cruz, 2016 ).

Following this logic, people’s conceptions include their own perceptions, beliefs, and representations about something, and they are developed over time through a socio-historical process, in addition to encompassing values, experiences, and cultural elements. The construction of these conceptions includes factors such as: characteristics of the person, birth order, stage of development, phase of family life, historical moment, customs, ethnicity, religion, morality, and sociodemographic characteristics (Lemos & Salomão, 2022 ). That said, parental conceptions are a vast field of research to expand knowledge about child development, since the way parents understand the development of their children influences their interactions. Therefore, knowing people’s perceptions about family is the first step to understanding family relationships, contributing to public policies, and planning interventions for those who need specialized care (Dessen & Ramos, 2010 ; Lemos & Salomão, 2022 ; Melo et al., 2023 ).

When dealing specifically with autism, the literature is extensive regarding the study of family conceptions on different topics. However, this study, in line with the premises of the bioecological model and current research in the area, values the protagonism of the different members of the family system, especially children and people with autism. In addition, it focuses on the positive aspects that enhance development and takes into consideration the interinfluence between the PPCT dimensions (Lemos & Salomão, 2022 ; Melo et al., 2023 ; Portes & Vieira, 2020 ).

Autism Spectrum Disorder (ASD) is currently one of the most prevalent and studied developmental disorders (Riccioppo et al., 2021 ). After several modifications in its concept and diagnostic criteria, it is currently characterized by multifactorial etiology, early onset and chronicity, with diverse manifestation of symptoms, levels of severity and responses to interventions. Essential characteristics include impairments in reciprocal social communication and social interaction, as well as restricted, repetitive and stereotyped behavior patterns (American Psychiatric Association [APA], 2022 ).

According to reports from the Center for Disease Control and Prevention (CDC) and the Autism and Developmental Disabilities Monitoring Network (ADDM), ASD diagnosis rates have increased by more than 100% since 2002. In the United States, one in every 36 children has currently been diagnosed with this disorder (Maenner et al., 2021 ). In Brazil, in turn, there is no official data on this subject, but the addition of specific information to the demographic census, based on Law No. 13.861 ( 2019 ), was an important step forward in this direction.

In contexts of atypical development, family experiences have specificities and factors such as family adaptation, resilience and stress levels, and the meaning of the experiences is modified based on the family style, its values, its conceptions, its coping resources, the roles of its members and, above all, support systems such as public policies and provision of services (Faro et al., 2019 ; Lemos & Salomão, 2022 ; Melo et al., 2023 ; Semensato & Bosa, 2017 ).

Research on ASD shows that mothers of children with this condition experience more stress and greater burden when compared to mothers of children with typical development (TD) or other disabilities (Riccioppo, et al., 2021 ). On the other hand, Loureto and Moreno ( 2016 ) state that the presence of an individual with ASD is not necessarily a hostile factor for families, since, even with obstacles, some of them achieve satisfactory levels of adaptation. In this sense, although the literature more frequently addresses the difficulties linked to these developmental contexts, there is an increase in the number of studies with more positive perspectives which include topics such as resilience, protective factors, support networks, and coping strategies (Lemos & Salomão, 2022 ; Riccioppo et al., 2021 ; Semensato & Bosa, 2017 ).

For all these reasons, it is understood that family relationships in contexts of autism inspire a systemic understanding, in which the participation of its different members must be legitimized under an analysis that admits the complexity of the interinfluences found in these relationships. In this sense, it is worth mentioning that fraternal relationships are hardly discussed in the literature, even though they play a significant role in the development of the individuals (Costa & Pereira, 2019 ; Lemos & Salomão, 2022 ; Loureto & Moreno, 2016 ; Moss et al., 2019 ; Petalas et al., 2012 ).

Therefore, emphasis is given to the relevance of studies that involve the conceptions of family members about the family and family relationships, as a basis for understanding these relationships in contexts of autism with the aim of outlining interventions in the area. Therefore, the objective of this study is to analyze the conceptions of mothers, siblings and adolescents with autism regarding the family, the maternal experience and fraternal relationships.

Method

The present work is defined as qualitative research with an exploratory and descriptive nature. This approach is compatible with studies carried out with families, as it helps expand the understanding of the phenomena investigated based on the reflections and attributions of meanings to the experiences and contexts by the participants.

Participants

The inclusion criteria to participate in the study were the following: (a) mothers of two or more children, one of whom diagnosed with ASD; (b) children and adolescents with TD between the ages of four and 16 who had a sibling diagnosed with ASD and lived in the same household as him/her; (c) children and adolescents diagnosed with ASD aged between four and 16 years old, who lived with their siblings and had social communication skills that enabled dialogue with the researcher. The recognition of such skills occurred through maternal reports and observations made by the researcher in initial contacts established using the rapport -based function. The exclusion criteria were the following: (a) children and adolescents with TD who met the inclusion criteria but who were not yet aware of their sibling’s ASD diagnosis; (b) children and adolescents diagnosed with ASD and another associated medical condition.

The participants in this study were 12 mothers aged between 33 and 50 years old, 19 children, 17 with TD aged between four and 16 years old, and two with ASD, one aged 11 and the other aged 13, living in the cities of João Pessoa and Cabedelo, located in the state of Paraíba. All mothers had children with ASD and TD, all siblings with TD had a sibling with ASD, and the individuals with ASD had one or more siblings with TD. Most families consisted of a father, mother, and children, except for two cases. Of the 12 children with ASD whose mothers were surveyed, only four were verbal, and of these, only two were able to answer the interview questions.

Instruments

Three types of characterization sheets and three types of semi-structured interviews were used. In addition to sociodemographic data, the sheets included contextual data related to the characteristics of the individuals and their family experiences (e.g., activities, routine, profession, therapies, placement on the birth order). The interviews covered questions related to the definition of family, its members, and their relationships (e.g., What is family to you? Who are the people in your family? Tell us a little about your siblings. Do you usually play with your siblings? What do you play?). The questions were developed based on research projects on family and used research methodology carried out with children (Agripino-Ramos et al., 2019 ; Dessen & Ramos, 2010 ; Landim et al., 2020 ; Ribeiro & Cruz, 2016 ).

Procedures

Data collection. Initially, the researcher contacted institutions (a public integrated health care center and a private multidisciplinary clinic) that care for children and adolescents with ASD and other diagnoses with the aim of obtaining recommendations for families who could take part in the study. The institutions contacted the families and provided the researcher with the contact details of those who were willing to participate in the research. She explained the proposal of the study over the phone and scheduled the first meeting with each of the families. Due to the unavailability of the fathers to participate in the interviews during mornings and afternoons, the research sample was made up of mothers who, in turn, recommended other mothers. This procedure characterized the use of the snowball technique.

The meetings took place at the participants’ homes and at the clinics attended by the children and adolescents with ASD, whichever was chosen by the mothers. Initially, the Free and Informed Consent Form was presented to the mothers and the Assent Form to the children and adolescents. The characterization sheets were filled out based on the information provided by the mothers and the semi-structured interviews were conducted individually, in private spaces, on the same day and at consecutive times, except in cases where the initial contact took place at the institutions. In these cases, the interviews with the children were scheduled to be conducted at their homes. The length of the interviews varied according to the age of the participants, their characteristics and the context but, in general, they lasted between 8 minutes and 1.5 hours. The interviews were recorded on audio.

Data analysis. The complete instruments consisted of an average of 12 questions, however, for this study, only those related to the topics addressed here were selected for analysis. The Content Analysis technique (Bardin, 2016 ) was used to analyze the data, which began with the pre-analysis, characterized by the organization of the material, text skimming, and formulation of hypotheses. Next, the material exploration stage was cited, consisting of the development of thematic classes and mutually exclusive categories elaborated a priori , considering the questions in the interview script. Finally, these data were discussed in conjunction with the literature in the area and the PPCT concepts of the bioecological model, and were exemplified based on excerpts from the participants’ reports.

Ethical Considerations

The study was approved by the Ethics and Research Committee of the Health Sciences Center (CCS) of the Universidade Federal da Paraíba, CAAE No. 78557617.6.0000.5188. Fictitious names were adopted to ensure the anonymity of the participants.

Results and Discussion

Initially, the participants’ characterization is presented ( Table 1 ) and then three thematic classes resulting from the analysis of their discourses are explained and discussed: conceptions ozmily, motherhood and fraternal relationships. From these classes, the following categories were derived: Definition of family, General motherhood description and Description of the experience with ASD, Interactions between siblings and Discovery of ASD.

The approach of the discourses begins with the thematic class that encompassed the three groups (mothers, siblings and individuals with ASD), followed by the one that included only the maternal discourses and ends with the one that addresses only the discourses of the siblings (with TD and with ASD). The results and discussion focused on what emerged in terms of conceptions, in a more general way, understanding that there is a variety of interinfluences according to the PPCT dimensions.

Sociodemographic data of the participants

Table 1
Characterization of the mothers and siblings with typical development

Mothers
Mother	Age	Children	Education Level	Profession	Marital status
Ana – F1 Eva – F2 Rita – F3	49 42 42	2 2 3	Complete higher education Doctorate degree Complete higher education	Retired Professor Speech therapist	Married Married Married
Maria – F4	41	3	Complete higher education	Housewife and artisan	Married
Marta – F5	47	3	Complete higher education	Teacher	Married
Paula – F6	50	2	Complete higher education	Lawyer	Married
Tânia – F7	48	2	Master’s degree	Professor	Married
Diana – F8	45	2	Post-Doctorate degree	Professor	Married
Glória – F9 Adriana – F10	33 30	2 4	Complete high school Higher Education in progress	Housewife Student	Married Single mother
Catarina – F11	44	3	Complete high school	Housewife	Married
Virgínia – F12	42	2	Complete higher education	Housewife	Divorced
Siblings with typical development
Sibling	Age	No. of siblings	Education Level	Birth order*
Mateus – F1	16	1	2 nd year H.S.	Older
Caio – F2	13	1	9th grade E. S.	Older
Laís – F3	13	2	8th grade E. S.	Older
Cecília – F4	8	2	3rd grade E. S.	Younger
Felipe – F4	12	2	7th grade E. S.	Older
Carol – F5	7	2	2 nd grade E. S.	Younger
Duda – F5	16	2	3rd year H. S.	Older
Davi – F6	15	1	1 st year H. S.	Older
Bela – F7	12	1	7th grade E. S.	Older
Nicolas – F8	14	2	2 nd year H. S.	Older
Lara – F9	4	1	Pre-I (RCCE)	Younger
Melina – F10	4	3	Pre-I (RCCE)	Younger
Murilo – F10	10	3	5 th grade E. S.	Older
Bruno – F11	9	2	4 th grade E. S.	Younger
Laura – F12	16	1	2 nd year H. S.	Older

• Note. E.S. = Elementary School; H.S. = High School; RCCE = Reference Centers for Early Childhood Education; * in relation to the sibling with ASD; FX = represents the identification of the family to which the sibling belongs.

The mothers’ ages ranged from 30 to 50 years old. Regarding marital status, most of the interviewees are married or in a stable relationship with the father of their child with ASD (83.3%), one is a single mother, and one is divorced. Regarding the number of children, most of the mothers have two (58.3%) and only one of them has four children. Regarding education level and profession, most have completed higher education (75%) and are currently working (58.3%).

Regarding socioeconomic status (SES), this data could not be obtained with greater precision due to the limitations of the instrument used, which classified family income between below one minimum wage and above four minimum wages. Based on this fact, the other family characteristics (profession, education level), and considering the eight levels of the Socioeconomic Status Indicator scale of the National Evaluation System of Basic Education, it can be concluded that most families (eight) are ranked at level VIII, with income above seven minimum wages.

A total of 53.3% of the siblings interviewed are female, have an average of two siblings, the average age of the participants is 10.7 years and 66.6% of the participants are older than their sibling with ASD. In addition, all the interviewees studied in regular schools, from daycare to the senior year of high school.

Regarding the participants with ASD, Renan (F11, SES I) and Igor (F5, SES VIII), aged 11 and 13, respectively, are the second children in the birth order of families with three children, and live with their siblings, biological father and mother. They did not have any medical conditions and, according to maternal reports, are characterized as Level 1 support. This classification is based on impairments in social communication and restricted and repetitive behavior patterns according to the DSM-5 criteria.

Renan is in the 5th grade of elementary school at a regular public school, practices swimming, and receives weekly interventions from a psychologist and educational psychologist in public health care facilities. He was diagnosed with moderate ASD at the age of six by a pediatric neurologist. Igor, in turn, is in the 8th grade of elementary school at a private school, practices judo and surfing, and receives weekly interventions from a psychologist and occupational therapist in private clinics. He was diagnosed with Asperger’s Syndrome at the age of three and a half by a pediatric neurologist. Both have been receiving interventions for at least five years.

Thematic classes

Thematic class #1: Conception of family

In the first category, called Definition of family , the conceptions of the mothers, siblings and adolescents with ASD were similar. Overall, they associated the concept of family with a sense of belonging, physical proximity, unity, care, mutual help, self-giving, love and exchange of affection. Children between four and eight years old responded concisely and attributed adjectives such as “cool”, “good” and “beautiful” to the concept of family.

Other points mentioned were the experience of sharing of moments, whether good or bad, and the fact that the family is the first group to which one belongs. It was also common for them to perceive family as the foundation of their lives, as a promoter of learning values ​​and a place for building personality and emotions. Examples include the following reports: “Family is about everyone coming together, staying together in any situation, sharing the good and the bad times, and always being together” (Glória, 33 years old, mother, F9); “It is a group of people who help each other when necessary, who are always by your side and who support you in whatever you do in life” (Caio, 13 years old, brother with TD, F2); and “It is someone who understands you, helps you follow the right path” (Igor, 13 years old, brother with ASD, F5).

These results are in line with the literature in the field, since Cardoso et al. ( 2020 ), through an integrative review on social representations of the family, identified that positive attributions to the family itself are common. On the subject, Ribeiro and Cruz ( 2016 ), similarly, identified idealizations around the concept of family in the speeches of the children surveyed who, despite this fact, also addressed their experiences of conflict. However, Cardoso et al. ( 2020 ) draw attention to this tendency towards positive attributions as a bias in studies focused on family concepts.

Although most mothers only pointed out positive aspects regarding the family system, some of them associated family with demands and stated that it is a difficult structure that requires determination. All of them indicated possibilities of finding, amidst the adversities, solutions to the struggles and the capacity to avoid or work around their destructive effects. In this sense, the influence of the ‘person’ dimension is observed, which involves individual characteristics arising from the interactions experienced throughout life. In this regard, Melo et al. ( 2023 ) are cited, as they mentioned the formative role of contradictory matters, crises and conflicts in people’s meaning-making processes, since, over time, they can be transformed.

From a bioecological perspective, the sense of inter-influence between the ‘person’, ‘process’ and ‘context’ dimensions is understood (Bronfenbrenner, 1996 ). In practice, maternal conceptions, permeated by personal characteristics, qualify family interactions which, in turn, impact the concrete family reality. Therefore, personal strengths support resilience processes and strengthen family relationships, facts that have a positive impact on the family routine (Faro et al., 2019 ; Semensato & Bosa, 2017 ).

Regarding the definitions of family, the three groups of participants mentioned other members that extend beyond the nuclear family (people related by blood, who live in the same house or who provide some type of support) and also pets. Examples include: uncles/aunts, cousins, grandparents, friends, employees who help with the family routine, doormen and school staff. Although the traditional family model predominated among the participants, there were also families with stepparents of siblings with TD and single-parent families.

Likewise, in studies carried out by Cardoso et al. ( 2020 ) and Ribeiro and Cruz ( 2016 ), the extended family and pets were mentioned as part of the family, a fact that indicates a more comprehensive, diverse and dynamic family perspective. In this sense, the ‘process’ dimension gains relevance, because, regardless of consanguinity, if there is affection, reciprocity and constancy, the relationships established between the members may act as primary drivers of development (Bronfenbrenner & Evans, 2000 ).

Thematic class #2: Motherhood

The two categories derived from this thematic class, General motherhood description and Description of the experience with ASD, emerged due to the need, according to the mothers themselves, to describe the experiences separately. Regarding General motherhood description, most mothers observed this experience positively and its importance was highlighted mainly by those who struggled to get pregnant. In some cases, this moment was considered a miracle in their lives.

Motherhood was perceived as a unique, exciting and enjoyable experience. The mothers emphasized moments during pregnancy, breastfeeding, as well as moments for playtime and leisure. On the other hand, they also listed the struggles, particularly in raising children and dealing with the challenges and different demands of daily life. Mixed feelings were portrayed such as distress and satisfaction, and they also associated their struggles with the number of children and the number of tasks linked to motherhood. This is an example:

To be a mother is to suffer in paradise. You suffer, but you are in a situation of... it’s strange, right? You look after them, you are responsible for them, it’s some sort of self-neglect, but it has its level of satisfaction, even though sometimes you feel like running away, right? Because we really stop being ourselves, it’s very good and very difficult (Marta, 47 years old, mother, F5).

From a bioecological perspective, parenthood is significantly influenced by the sociocultural context, the history of the individual in their own family, and the subjectivity of each one. According to Bronfenbrenner ( 1986 ), it is understood that the ‘context’ dimension is strongly explanatory regarding family relationships, from the microsystem that refers to the closest relationships, to the macrosystem, that is, the broader social structure in terms of public policies (Melo et al., 2023 ; Portes & Vieira, 2020 ).

Regarding the Description of the experience with ASD, the mothers mentioned more specific adversities that encompass different aspects of life, both individual and familiar and social aspects which include significant changes in the family routine and difficulties related to prejudice, social inclusion and access to rights. There were reports about the diagnosis and its impacts on different contexts, about family relationships, balanced roles and future concerns and expectations.

Nevertheless, the experience with ASD was depicted as a constant learning process, since, at each new stage of development, new demands and challenges are faced. This process highlights the ‘time’ dimension in relation to the time since diagnosis, the phase of family life and the moment in the life cycle of each member of this system (Lemos & Salomão, 2022 ; Portes & Vieira, 2020 ). Here is an example:

Life has become more difficult, but not less important, on the contrary, it has become more important, it has become harder, but also enriching. It is undeniable that my worldview has changed, the way I see things, my values, I am a different Paula before and after the autism diagnosis, for sure. I think I have changed for the better in a human sense, as a person, in terms of caring more about others. It sure isn’t easy, it is very, very difficult, but I just keep trying to cope with it as best I can (Paula, 50 years old, F6).

Maternal reports on the experience of having a child with ASD are relevant sources for understanding family coping strategies. Studies in the area reveal that in family contexts characterized by healthy functioning, there is a good balance regarding the cohesion among its members and the ability to adapt and respond efficiently to stressful situations (Faro et al., 2019 ; Lemos & Salomão, 2022 ; Semensato & Bosa, 2017 ).

Marital relationship was cited by some mothers as an aspect commonly affected after the ASD diagnosis. They mentioned that the presence of the fathers is necessary for good family functioning and that they must take care of their relationship as a couple by taking the time to enjoy moments together. In this sense, the research carried out by Portes and Vieira ( 2020 ) on coparenting in contexts of ASD is cited, in which mothers recognize the efforts and importance of their spouse, even if they have a more permissive sense of discipline and the women are left with a greater burden while caring for the child with ASD.

Furthermore, some mothers stressed the importance of finding a balance between being a mother and being a woman and stated that they need to be physically and emotionally well for themselves, their husbands and their children in order to avoid negative repercussions such as fatigue, stress, anxiety, depression and damages to their relationships. The following statement confirms this assertion:

I started taking care of myself, but I neglected myself so much to give them life, now I see that it doesn’t work like that, you have to take care of yourself because you get weak and they can’t stand on their own two feet. After a long time, I started to realize that. I must take care of myself; I must be well. I wasn’t putting up with it anymore, I would go take a shower and I would start crying out of nowhere. I started cycling on the beach, I started doing yoga, and then things started to get better (Maria, 41 years old, mother, F4).

Thus, it can be noticed that the demand for care requires a great deal of investment from the mothers. This report shows the influence of the ‘context’ and ‘process’ dimensions. In these aspects, Faro et al. ( 2019 ) state that social support, marital support, the ability to observe positive aspects in the child’s skills, and the continuous fulfillment of professional duties act as protective factors associated with maternal mental health, which end up influencing parental behaviors and family relationships. According to Bronfenbrenner and Evans ( 2000 ), all this information provides the best clues for thinking about future interventions.

Still regarding the maternal experience with ASD, the mothers said that their children with ASD require greater follow-up and dedication than their children with TD, which causes them distress and suffering. In this process, some observed changes in the experience of their children with TD regarding ASD over time and said that, with the arrival of their teenage years, they began to depict ASD more naturally and better interact with their siblings. Thus, the influence of the ‘time’ dimension can once again be inferred, a fact that is in line with studies on fraternal relationships.

According to Petalas et al. ( 2012 ), many people who have a sibling with ASD state that their own needs or desires were adapted or disregarded in favor of those of their siblings. Additionally, Costa and Pereira ( 2019 ) pointed out that siblings with TD, although recognizing that their parents provide more care and attention to their siblings with ASD, did not express resentment in this regard and demonstrated understanding of the fact. It is interesting to note the ‘process’ dimension, as the specificities of family interactions experienced in ASD contexts can be reinterpreted by the siblings and bring about positive repercussions regarding the development of socio-emotional skills (Loureto & Moreno, 2016 ).

Thematic class #3: Fraternal relationships

Two categories emerged from this thematic class: Interactions between siblings and Discovery of ASD . Regarding the interactions, playtime between siblings with TD and those with ASD was mentioned. Siblings with TD mentioned interactions that involved motor skills and physical touch, such as tag, hide-and-seek, tickling, wrestling, arm-grabbing, and spinning. The younger ones characterized the interactions by mentioning the requests usually made by their sibling with ASD (he asks for food) and the names of the toys used to play together (play dough, dolls, Spider Man, Hello Kitty). In addition, the good sibling relationship and the fact that the parents usually participate in these moments were depicted:

I usually play ghost and ball with him. When my father comes home at night, we play ball, ‘keep away’ (...). He tries to catch the ball and kick it. About the ghost play, I just hide and shout: Boo! (laughs) and he comes looking for me (Bela, sister with TD, 12 years old, F7).

Similar data were found in the study by Costa and Pereira ( 2019 ), in which participants revealed that they share playful and fun moments with their siblings with ASD. Although the siblings differ in terms of intellectual development, personality, preferences, and skills, an affectionate fraternal relationship is essential for healthy psychosocial development. From the perspective of the PPCT dimensions, the quality of these relationships will depend on factors such as: family structure, cohesion, and beliefs, quality of mediation, birth order, siblings’ ages, personal characteristics, and socioeconomic and educational levels (Bronfenbrenner & Evans, 2000 ).

Costa and Pereira ( 2019 ) reported that the siblings with TD indicated that they are more tolerant when faced with difficulties in the fraternal relationship, that they tend to react negatively to the attitudes of those who are less understanding and that they are proud of their siblings with ASD for their progress and achievements. Such data were also observed in the present research, and they highlight the ‘process’, ‘context’ and ‘time’ dimensions.

On the other hand, although the siblings emphasized that they play together, the statement that siblings with ASD prefer to play alone was found in some reports, which demonstrates the influence of the ‘person’ dimension, particularly regarding the characteristics of ASD. Along with this statement, the sense of respect for this tendency towards isolation was highlighted: “He likes to play video games alone, I let him play alone, he likes to watch his video and just stays there” (Mateus, 16 years old, brother with TD, F1); and “Sometimes, I can’t socialize with him because he doesn’t let me. I say: Igor, Igor! And he ignores me, it’s as if he doesn’t want to talk, as if he doesn’t want to socialize” (Carol, 7 years old, sister with TD, F5).

This data is consistent with Igor’s speech, an adolescent with ASD, who says he prefers to do certain activities alone. According to Goldsmid and Féres-Carneiro ( 2011 ), fraternal relationships are built from a complex tangle of feelings related to cognitive, cultural and social elements. Thus, the behavioral characteristics of the person with ASD, understood as part of the ‘person’ dimension, permeate, influence and qualify these fraternal interactions and are essential to understanding these relationships. The following statement illustrates this: “I like to imagine things, watch videos and play games too. I do these things kind of on my own, because I feel good, I feel happy” (Igor, 13 years old, brother with ASD, F5).

Still regarding fraternal interactions, siblings with ASD pointed out the following: “We relax, rest, play, go to the beach. My dad is going to buy a net for us to catch some fish” (Renan, 11 years old, brother with ASD, F11); and “I don’t usually play much with my sisters. Except when I’m rollerblading, we have some fun, or sometimes when I go out with them” (Igor, 13 years old, brother with ASD, F5). The topic in question was explored by Rum et al. ( 2024 ) while investigating the perspectives of mothers and siblings with TD. The results revealed the inherent differences in these relationships, including a pattern of lower engagement. In this sense, the research carried out by Loureto and Moreno ( 2016 ) showed that the autism characteristics and the lack of parental time are factors that hinder family interactions.

One of the participants described his sister with ASD as calmer than his sister with TD and said that, although she has breakdowns from time to time, he does not usually get bothered by them and tries to help her using dialogue: “When she is angry, I try to calm her down, but sometimes they tell me not to interfere and just leave her alone. I try to talk to her, I ask her what she wants” (Felipe, 13 years old, brother with TD, F4). Here is another report that describes the behavior of a brother with ASD:

He gets aggressive, he doesn’t behave, but he has to behave at school and he has to write down names, make souvenirs, study, write, paint (...), his teacher has to teach him how to paint, if he doesn’t paint he will be very happy with his family, [he’s] very stubborn, but he can’t be, he has to be close to his happy family when he behaves like this (Lara, 4 years old, sister with TD, F9).

Challenging behaviors can be associated with several variables, including cognitive and communication difficulties and environmental factors. It is common for social-communicative deficits to be associated with inappropriate behaviors, such as tantrums and aggression. For Moss et al. ( 2019 ), these were the most common problems reported by siblings who live with siblings with ASD. Such behaviors can cause their siblings to have conflicting emotions, such as irritation and empathy (Petalas et al., 2012 ).

Regarding the Discovery of ASD , most of the interviewees said that the initiative to explain about ASD came from their parents. Two siblings, however, mentioned that they were the ones who asked about the behaviors of their siblings with ASD. In other cases, the sibling with TD said that they only remembered their parents telling them that their sibling was different, that he had ASD, but that they were too young and therefore it had not made any difference to them. Most of the siblings, especially the adolescents, reported not remembering how their parents had explained about ASD, and attributed this to the fact that the conversation had taken place when they were still children, as shown in the following example: “It was discovered very early and from what I remember I already knew, that’s why I don’t remember how I reacted or anything like that, but it was okay, I guess, right?” (Laura, 16 years old, sister with TD, F12).

The communication and the provision of information about ASD by parents are considered important factors for siblings to understand the disorder. In the study conducted by Costa and Pereira ( 2019 ), all participants stated that they discovered their sibling’s condition through their parents and recognized that their families have similar characteristics to others, although they experience different and specific demands related to ASD.

Communication and interaction difficulties caught the attention of some of the participants. The mediation provided by the mother was highlighted in these cases, since she appeared in several reports as the figure who, in addition to explaining the disorder to her children with TD, also encouraged the fraternal relationship. In the study developed by Loureto and Moreno ( 2016 ), the mother was identified by the participants as the main support figure for individuals with TD.

Based on these findings, it is reiterated that this research brings important contributions, since the individuals’ conception systems are valuable factors that affect the development, the interactions, the adaptation and the resilience of families. In addition, the leading role of the research subjects, through their statements, is cited as indelible sources of a range of realities that are influenced by people, their processes, contexts and time.

The study identified the following healthy family resources: a positive and expanded concept of family, a concept of the experience with ASD as a learning experience, the presence of support networks, time for self-care as well as moments for playtime and leisure, affectionate family relationships, the quality of maternal mediation and paternal participation, the search for balanced roles and attention to different family members, family communication and cohesion, and knowledge about the characteristics of ASD. Potential stressors include: maternal burden, daily demands, number of children and tasks, lack of parental time, interactions with lower engagement, characteristics of ASD, greater dedication to the child with ASD, prejudice, social exclusion, and difficulties related to public policies and services provided in the area of ​​ASD.

Based on the systemic perspective of human development and the PPCT dimensions, a wide variety of interinfluences that are part of a family system was observed. Although it was not possible to analyze them in detail for being out of the scope of this study, it can be said that this is a bias in the bioecological model, which broadens the researcher’s view on the multiplicity of factors that act on the phenomenon studied, but there is no way to delve into them in depth in a single study, making it necessary for the researcher to make choices.

As for the limitations, we can mention the predominance of participants with a high economic level and who are part of family systems with stable and healthy relationships. For future studies on this topic, it is recommended that a larger number of participants from different populations and family configurations be included. The participation of the fathers is also suggested as well as the use of different research designs such as longitudinal and correlational studies, along with observational methodology and ecological insertion.

This study is expected to contribute to the understanding of family experiences in contexts of autism. It is argued that support services should be created with new perspectives, in addition to intervention possibilities aimed at these families. The main goals are the following: mitigate the effects of potential stressors, maximize healthy family resources and encourage the development of coping strategies. Such actions must consider the specificities inherent to autism, the PPCT dimensions and the interinfluences of marital, fraternal, parental and extended family relationships.

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• How to cite this article:

  Lemos, E. L. M. D., Dantas, G. A. A., Vasconcelos, D. C., Agripino-Ramos, C. S., & Salomão, N. M. R. (2024). Family and fraternal relationships: Conceptions of mothers, siblings and adolescents with Autism. Paidéia (Ribeirão Preto), 34, e3424. doi: https://doi.org/10.1590/1982-4327e3424

Edited by

Associate editor:

Vanessa Barbosa Romera Leme

Publication Dates

• Publication in this collection
  04 Nov 2024
• Date of issue
  2024

History

• Received
  02 Nov 2023
• Accepted
  16 May 2024
• Reviewed
  26 Mar 2024