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Although the literature has provided a large body of evidence about the impact of having a child with Autism Spectrum Disorder (ASD), studies on how this influences typically-developing (TD) siblings are scarcer and less consistent in their findings. Moreover, fewer studies have included TD siblings from non-English speaking countries as informants from a qualitative perspective. Semi-structured interviews were conducted to explore the experiences of adolescents and adults with a sibling with ASD. The sample comprised 14 TD people from Spain aged between 12 and 29, currently living with a sibling with ASD. The thematic analysis revealed that participants identified seven domains of impact, grouped into three different levels: personal, dyadic, and family. The findings of the present study highlight the complexity and heterogeneity of TD sibling experiences and relationships among family members. This study presents topics that are of particular relevance to the Spanish context while identifying commonalities with other studies. These results highlight the importance of cultural factors in some family processes. In addition, results shed light on how TD siblings appraise differential parental treatment and potential protective factors for adjustment, incorporating the relevance of the individual parent-child relationship and certain parenting components as potential protective factors for TD siblings. Such information is important to develop more accurate and effective interventions and adjust the necessary resources to assist TD siblings.
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Autism spectrum disorder (ASD), which is defined as a neurodevelopmental disorder, is characterized by difficulties in social communication and restricted interests or repetitive behavioral patterns (APA, 2013). It is important to emphasize the concept of spectrum, as there is a wide range of related clinical and behavioral manifestations (Barthèlemy et al., 2019). For example, within the difficulties in social communication, some individuals may exhibit extreme social inhibition, difficulties in adequately responding to social interactions, difficulty adapting to social communication situations, or even extreme social disinhibition, such as hugging strangers (Hervás, 2016). In addition, within restrictive behavioral patterns, stereotypical behaviors such as echolalia or hand flipping, and cognitive and behavioral inflexibility are frequent (APA, 2013). Multiple studies have indicated that individuals with ASD might also display a different sensory profile, with hyper or hypo-sensitivity to certain stimuli, such as loud noises, temperature, and touch (Siemann et al., 2020). These difficulties, along with the frequent occurrence of comorbidities and the context surrounding the person with ASD (going to different therapies, more attention needed…) imply that a child with ASD has the potential to have a great impact on the whole family system (Macks & Reeve, 2007). From a systemic perspective, the family system is composed of bidirectional relationships (marital, parental, fraternal…), that need to be adjusted when faced with a changing situation, to reach balance again (Andolfi, 1984; Minuchin, 1985). Therefore, having a child with ASD influences the interactions and relationships between members in the family context.
Sibling or fraternal relationships are one of the most significant and long-lasting bonds in a person’s life (Feinberg et al., 2012; Orsmond & Seltzer, 2007), often being the first social interaction experiences children have with peers. These relationships are characterized by rivalry and support (Barak-Levy et al., 2010) and are not elective (Feinberg et al., 2012). These experiences are the first situations where individuals have to share, compete, and help each other in a horizontal relationship. Thus, due to frequent interactions, siblings are an important source of learning and emotional and social support, playing an essential role in the cognitive, social, and affective development of individuals (McHale et al., 2016). Moreover, the cultural, family, and socioeconomic context shared by siblings is more similar than any context they may share with other people (Keirsey, 2016). Sharing the same family context also means that sibling relationships are influenced by other intrafamily factors, such as parent-child relationships, couple relationships, and differential parental treatment (Feinberg et al., 2012). Sibling relationships are also related to individual well-being and, as such, become an important risk or protective factor for individuals’ mental health (Feinberg et al., 2012). These factors make sibling relationships a complex and unique type of relationship. Having a sibling with ASD often entails specific and differential characteristics in the sibling relationship that influence not only the interactions between siblings but also different aspects of the family dynamic.
At an individual level, research has predominantly focused on the impact on the adjustment of TD siblings of individuals with ASD, reporting mixed and inconsistent findings (McHale et al., 2016; Meadan et al., 2010; Orsmond & Long, 2021). Some authors have found that TD siblings have a negative adjustment, including high rates of or a higher risk of developing emotional and behavioral difficulties (e.g., Griffith et al., 2014; Lovell & Wetherell, 2016; Orm et al., 2021; Ross & Cuskelly, 2006). Other studies have reported no significant differences between these children and other sibling populations (e.g., Dempsey et al., 2012; Hastings & Petalas, 2014; Shivers et al., 2013); in fact, they have even reported positive outcomes, such as higher levels of social competence (Meadan et al., 2010), prosocial behaviors (Orm et al., 2021) or perspective taking (Shivers, 2019), in comparison with other populations. A recent meta-analysis by Shivers, Jackson et al. (2019) concluded that while TD siblings of children with ASD were found to have higher rates of internalizing problems, worse psychological functioning, and more social functioning impairment than comparison groups, there were no differences found in the development of externalizing or total behavior problems. Concerning TD sibling relationships with individuals with ASD, research in this area has again found mixed and inconsistent results (McHale et al., 2016; Orsmond & Long, 2021; Orsmond & Seltzer, 2007), with some authors reporting negative interactions between siblings that are characterized by less intimacy, less nurturance (Kaminsky & Dewey, 2001) and significantly poorer sibling relationships than siblings of TD individuals (Shivers et al., 2019). Ross and Cuskelly (2006) reported aggressive behaviors in the sibling with ASD as a problem for 52% of the TD siblings in their study, highlighting it as one of their main stressors. Other studies have found no differences with other disabilities or typically developing sibling pairs (Shivers & McGregor, 2019). Research has also emphasized the complexity of sibling relationships, establishing that while TD siblings develop positive feelings about their ASD sibling, such as feelings of pride, love, and appreciation for the qualities of their ASD sibling, that experience is often accompanied by feelings of anger, embarrassment, and increased responsibility (Leedham et al., 2020; Mandleco & Webb, 2015; Schmeer et al., 2021; Watson et al., 2021).
Alongside sibling relationships, the parent-child relationship is an essential component of a person’s development. Previous research has shown that parental stress or depression are related to TD siblings’ adjustment (Giallo & Gavidia-Payne, 2006; Quintero & McIntyre, 2010); however, the impact on this dyadic relationship itself has been largely overlooked. The few studies that have addressed this topic have reported an overall positive relationship between TD siblings and their parents, despite the conflicts (Keirsey, 2016; Pavlopoulou & Dimitriou, 2019; Pavlopoulou & Dimitriou, 2020). Moreover, most TD siblings feel that they receive less attention than their brother or sister with ASD (Cridland et al., 2016; Corsano et al., 2017; Leedham et al., 2020; Tsai et al., 2018; Ward et al., 2016). These feelings are often accompanied by an acknowledgment of their sibling’s increased level of needs (Keirsey, 2016; Safran, 2017). However, studies specifically focusing on this topic are scarce.
Finally, at the family level, research has consistently provided evidence on the impact of having a child with autism on family dynamics from the parents’ perspective. Parents perceive higher levels of social isolation and consider that family routines and dynamics often revolve around the person with ASD (Degrace, 2004; Fletcher et al., 2012; Ludlow et al., 2011). The few studies that have included the TD siblings’ perspective have drawn similar conclusions, namely, that siblings perceive a reduction or limitation in their family’s social life (Cridland et al., 2016; Gorjy et al., 2017; Keirsey, 2016; Petalas et al., 2009).
It is important to highlight that most studies in this field have been conducted in English-speaking contexts; therefore, it is important to expand our knowledge of other sociocultural environments. Using the ecological model as a framework, interactions between the person and the context are important for their psychological functioning (Bronfenbrenner, 1979). This model describes different levels of influence including microsystem, mesosystem, exosystem, and macrosystem. Macrosystemic influences such as cultural factors, and mesosystemic influences, such as how the services are organized, are an important influence on the development and adjustment of individuals but are often overlooked.
Recent studies have found differences among the experiences of TD siblings in different cultures (e.g., Long et al., 2021; Tsai et al., 2018) and have incorporated cultural elements in their interpretations (e.g., Hwang & Charnley,2010); Kao et al., 2012). In Spain, familism, defined as a form of social structure in which the family plays a central role in providing social support and care (Marin & Marin, 1991), is a core cultural value. As such, communal orientation might be more frequent or valued. More specifically, (1) family members of different generations live together for longer than in other countries, and (2) care of dependent members falls mainly to kin (Calzada & Brooks, 2013; del Valle et al. 2013). In addition, in Spain, similarly to other Mediterranean countries, there is a high rate of individuals spending longer co-residence time with their nuclear families due to delays in leaving the parental household (Eurostat, 2021). Finally, other characteristics of the Spanish context that are key elements to consider are (1) the tendency to stay near one’s nuclear family, often living in the same city—even in the same neighborhoods—after leaving the parental household, and (2) the relevance of family traditions. For instance, some of the most relevant family traditions in Spain are weekend family meals, family celebrations of birthdays, patrons’ days, and spending holidays together, often including the extended family. Additionally, religious celebrations are still important and are mainly celebrated with the family (López, 2010). All these idiosyncrasies of the Spanish context involve differences with other countries in family relationships and their interactions with society. These particularities justify the possibility of differences with other cultures in the experiences of TD siblings and how relationships are shaped and influenced by growing up with a sibling with ASD. To our knowledge, there are no studies in Spain that have addressed the experiences of TD siblings.
To date, research in the field of TD siblings has mainly been quantitative and has relied on parents as informants of both adjustment and sibling relationships (e.g., Dempsey et al., 2012; Griffith et al., 2014; Shivers et al., 2013; Tudor et al., 2018); however, there has been an increase in self-reporting (e.g., Hastings & Petalas, 2014; Tsai et al., 2016). These approaches have greatly contributed to our understanding of TD siblings in the context of a family with a child on the autism spectrum. However, due to the complexity of sibling relationships, it is important to incorporate siblings’ voices into research using complementary approaches, such as qualitative methodologies. These methodologies are a way of having a more in-depth understanding. This in turn will enable us to understand better and incorporate the complexity and intricacies of the impact of having a sibling with ASD into service provision for these families.
In sum, having a sibling with ASD has an impact at different levels. The current literature reports mixed findings regarding the adjustment of TD siblings and the quality of their sibling relationships, with few studies focusing specifically on parent-child relationships and family impact. In addition, despite the importance of macrosystemic influences on the development of individuals and more specifically the evidence on cultural differences on the impact on TD siblings, there are few studies in contexts with familistic values, particularly in Spain. Finally, as mentioned, most studies have not included the self-reported experiences of TD siblings. This study aims to address these gaps using a qualitative methodology with a sample from Spain and to explore the impact in a broad sense, while explicitly asking about relationships within the family.
The general aim of the present study is to analyze the experiences of adolescents and young adults living with a sibling with ASD in the Spanish context. Thus, we ask the following research questions:
RQ1. How does having a sibling with ASD influence TD siblings?
RQ2. How does having a sibling with ASD influence the relationship of TD siblings within the family?
Method
We addressed these research questions by conducting face-to-face semistructured interviews with TD siblings from Spain who were recruited via referral by their parents. We used a thematic analysis approach to create themes representing the influence or impact of having an ASD sibling on the life of TD siblings. In this section, we will detail in more depth the participants, measures, procedure, and data analysis used in this study.
Participants
Participants were 14 TD adolescents and adults aged between 12 and 29 years (M = 16.86, SD = 5.01) from southern Spain who had a sibling with ASD. Of the total sample, 42.90% (n = 6) were adults, and 50.00% (n = 7) were female. Siblings with ASD ranged in age from 3 to 25 years (M = 13.36, SD = 7.01), and 35.70% (n = 5) were female. The severity of the symptoms manifested by participants’ siblings with ASD, varied according to the Childhood Autism Rating Scale (CARS; Schopler et al., 2002), with 57.14% of them having moderate symptoms, 7.14% having mild symptoms and 7.14% having severe symptoms. We did not have information about the severity in 28.54% of the cases. The majority of participants (85.71%) were older than their siblings with ASD, and all of them lived with their parents and their siblings with ASD. This living situation meant that despite not having a primary caregiving responsibility per se, they shared daily time and experiences with both the sibling with ASD and at least one parent; this means that for long periods, these individuals dealt with possible difficulties related to their household context.
Measures
To collect descriptions of both the TD sibling and the sibling with ASD, as well as of exploring the first-person experiences of TD siblings, participants completed a sociodemographic questionnaire and participated in a one-to-one face-to-face semistructured interview. In addition, professionals working with the child with autism spectrum disorder completed a questionnaire. Next, we provide a detailed description of the measures we used in this study.
Sociodemographic Profile
Participants completed an ad hoc questionnaire about their gender, age, occupation, and genogram. The genogram is a visual representation of the family and their relationships. It was used to know who was part of the family (grandparents, parents, children), who lived together, if parents were divorced, and if they were a reconstituted family.
Childhood Autism Rating Scale (CARS; Schopler et al., 2002)
The Spanish version of the 15-item Childhood Autism Rating Scale (García-Villamisar & Polaino-Lorente, 1992) was used to assess the severity of the symptoms manifested by the sibling with ASD. Although originally created to assess children, this scale can also be a useful tool for screening adolescents and adults (Mesibov et al., 1989). The scale was completed by a professional currently working with the person with ASD, who rated their behavior ranging from 1 (no autism) to 4 (severe autism).
Semistructured Interview
The interview protocol was created ad hoc, using as a guideline the one used in the study by Jensen et al. (2021); the contents were deemed relevant by the research team after a literature search taking into account the research questions. An initial proposal of general and specific contents was presented in a research team meeting and then further refined and developed. The final interview protocol was divided into four general sections. The first section included introductory questions about the participants themselves and their siblings with ASD (Tell me a bit about yourself, how would you describe your sibling with ASD?). The second section focused on the diagnosis communication and their needs at that time (How did you determine your sibling’s diagnosis? What did you find difficult to understand at that moment? What did you find helpful at that moment and what do you think would have helped more?). The third section included questions about the participants’ relationship with their sibling with ASD and their parents, as well as their perception of the impact of having a sibling with ASD in their lives (How is your relationship with your sibling? How is your relationship with your parents? How is your relationship with your parents compared to that of your sibling with ASD? What has been the impact on your life of having a sibling with ASD? What do you think you need at this moment or would find useful?). Finally, the last section focused on participants’ expectations and hopes for their sibling with ASD (How would you like to see your sibling in 10 years? What support and resources do you think you and your sibling might need in the future?). In the present study, we focused on the impact of having a sibling with ASD and participants’ relationship with the sibling with ASD and their parents. The interview protocol was reviewed by experts in the field of family support.
Procedure
This study was carried out within the framework of a broader research project conducted in 2018, entitled “Families that live with a person with ASD. An analysis of the complexity of the experiences from a psychosocial perspective” (MVH_AUT_2017_1). This research project focused on the experiences and needs of families with a child on the autism spectrum in the Spanish sociocultural context. It is a cross-sectional study using a sample of convenience. We collected both qualitative and quantitative information. Approval from a regional ethics committee was obtained (1517-N17).
Families were recruited via email, phone calls, and meetings with regional and local associations, schools, and centers that provide services to people with ASD using a referral sampling technique. Siblings were recruited through their parents and interviewed if they fit the following inclusion criteria: 1) to be at least 12 years old or turning 12 years old in the following three months; 2) living in the south of Spain; 3) not being diagnosed with ASD. Parents of underage participants explicitly consented to their participation. In addition, every informant participated in the study voluntarily after signing an informed consent document, in accordance with the Declaration of Helsinki. The informed consent included information such as the objective of the study, the voluntary, the confidential nature of the study, and the right to withdraw their participation from the study at any moment, without there being consequences in the services.
A member of the research team with clinical training and experience in qualitative methodology conducted a semistructured, one-to-one face-to-face interview with each participating sibling in Spanish. We carried out these interviews during 10 months, from February 2018 until November 2018. We interviewed TD siblings in the space they decided they felt more comfortable and adjusted to their schedule. All siblings signed a consent form and were asked if they would allow their interview to be audiotaped. This permission was granted in all but two interviews, during which extensive notes and verbatim quotes were taken instead. Informants received no compensation for participating in the study.
After the data collection, we dissociated the recordings from the informed consent and sociodemographic questionnaires so the individual could not be identified, and each family was assigned an identification number. Data from the questionnaires were analyzed using SPSS.
Data Analysis
After the interviews, we conducted a thematic analysis, following Creswell and Poth’s (2018) instructions for qualitative analysis and using an intercoder reliability approach to thematic analysis. Steps were taken to achieve the quality standards needed to ensure an adequate level of rigor, validity, and credibility in the qualitative analysis (Patton, 2002; Tracy, 2010). Specifically, the interviews were transcribed verbatim and verified by a second member of the research team. We then performed an inductive analysis of the transcriptions to generate the categories. We created an initial codebook using three randomly selected interviews, i.e., coding them jointly, writing down possible names for the codes, then doing a refining process and defining each code in more depth. We then coded the other interviews independently, using a flexible approach and incorporating new codes as and when needed. We held biweekly meetings with a supervisor to audit the coding process and to discuss differences in the coding process. We reached an intercoder reliability rate of 86%, where decisions were jointly made by the two coders and supervised during the auditing process (Campbell et al., 2013). The use of a detailed coding book, two independent coders who discussed and had to agree in every code in each interview, and the auditing process of the coding helped to avoid and address coder drift. Finally, we performed a thematic analysis by going back and forth through the transcriptions to identify themes, having regular meetings to verify the themes and go in more depth about the meaning, identifying nuances and overarching themes. We started with 11 themes and then refined and interrelated the content to reach the final seven themes and two subthemes. We used NVivo (Version 12) to organize the coded data and the themes and to retrieve the quotes used to illustrate them. The quotes were translated into English by one of the authors, reviewed by the research team, and finally proofread by a native English speaker.
Results
The interpretation of the initial and higher-level coding resulted in the identification of seven themes linked to participants’ perceptions of the impact of having a sibling with ASD. For organizational purposes, we organized the themes into three subcategories according to the impact level: personal, dyadic or family (see Fig. 1).
Fig. 1
Summary and organization of themes and subthemes
×
As presented in Fig. 1, within the personal subcategory, we identified three main themes: personal growth, life plans, and negative feelings. In the dyadic supra-category, we included two themes: desire for a typical relationship with a sibling with ASD, and they do not treat us the same way; the latter involved two subthemes: neutral/positive appraisal and negative appraisal. Finally, in the family supra-category, we identified two emerging themes: everyday life and family climate.
Personal Impact
The personal impact supra-category comprised different themes related to participants’ perceptions of the impact of their situation at an individual level in areas such as their social relationships, careers and personality. Some participants stated that having a sibling with ASD had a marked impact on different aspects of their personal life. We identified three broad themes related to this individual dimension: personal growth, life plans, and negative feelings.
Personal Growth
Participants frequently stated that having a sibling with ASD had an impact on their personal growth, often identifying a positive impact in terms of being more tolerant, having more patience and generally being more sensitive toward others. A TD sister (18 years old) stated “I am more empathic with people; I appreciate more everything I have, and I am definitely more patient”. Other participants mentioned:
It has made me a more sensitive person; those topics (related to disability or difficulties in general) touch me a lot. I think that if I hadn’t had Z (sibling with ASD) as a sister, I would know nothing about it. It has been eye-opening (15-year-old TD sister).
Personal growth also involved recognizing a “silver lining” despite the difficulties of the situation, as well as the feeling that, in general, having such a sibling had benefitted them. Some participants stated that having a sibling with ASD had provided them with useful strategies for dealing with day-to-day problems more effectively, showing signs of resilience, and readjustment after the changes due to having a sibling with ASD.
I think it has helped me a lot to get things into perspective. I mean, when I encounter different problems, I just say, “There are people who are having a harder time, and there are people who have things that are actually incurable and that cannot be fixed”. So, that helps me a lot in my daily life; it enables me to say to myself, “Look, this problem is not as serious as it seems”; it helps calm me down (18-year-old TD brother).
Finally, personal growth involved the acknowledgment that having a sibling with ASD had enabled participants to develop and express a side of themselves that would not have been possible otherwise, not only in terms of knowledge and capacities but also in terms of personality traits. For example, a 23-year-old TD sister stated “then there’s also the issue of being more affectionate. I’m often harsh with people, with my parents; however, with him, I have that moment when I know he’s always going to hug me. He is unconditional”. Another example could be:
My brother (sibling with ASD) is very, very, very affectionate. So, when he sees me, he gives me kisses and hugs; I love him so much. I feel very connected to him, and he is the only person I am that affectionate with, and I constantly give him kisses and hugs. (18-year-old TD sibling).
In summary, the theme of personal growth reflected the perception of finding benefits directly derived from having a sibling with ASD. This theme also pointed toward resilience factors in the TD siblings of individuals with ASD, and the capacity to readjust and find balance after the changes.
Life Plans
This theme reflected participants’ feelings that having a sibling with ASD had influenced their plans for their current and future life. These feelings included perceptions of increased levels of responsibility related to caring for their sibling with ASD and to shouldering more family responsibilities, highlighting higher levels of involvement in the family relationships. Some participants talked about this sense of increased responsibility as something natural, part of the readjustment the family had to do, with no negative connotations, while others felt it to be a burden.
I’ve perhaps had to be more responsible more often than other people my age. I’ve taken on more responsibility on many occasions, such as staying home with my brother and taking care of him (…). But from my point of view, this is normal. (…) I’ve learned things beyond, let’s say, learning how to cook and how to manage some things at home before… but that’s just the way it is (20-year-old TD brother).
Taking care of her, especially in situations where my parents are not there. Sometimes I have wanted to be in another place and not with her, but I have stayed with her. I am the first to take care of her because I know what I have to do, and other people don’t. In the future, I would like to take care of her (18-year-old TD sister).
This category also reflected how having a sibling with ASD had impacted participants’ careers and personal relationships. Regarding career choice, the female participants reported either working in “helping professions,” such as social work, psychology, or social education, or considering pursuing this career path. In all cases, the participants said that having a sibling with ASD had a definite impact on this choice which seemed to derive mainly from their socialization experiences i.e., from their experience with providing the services that their sibling with ASD needed. Their choice was also influenced by their sensitivity toward the needs of others as a result of their own experiences as a TD sibling.
Ten years from now, I don’t know, I would like to see myself living on my own, with a career, working in or studying (….) psychology (…). It’s an area that has interested me since my sister began to go to all those doctors, and I saw how they were helping her, how they worked (14-year-old TD sister).
Regarding personal relationships, some participants stated that having a sibling with ASD did not have an impact on their friendships, with their friends being aware of and talking openly about the situation. A TD sister (15 years old) said “I feel very proud of my sister. So… all my classmates know her, and at school when we meet during recess, I say hello to her, and all of my friends greet her”. However, others felt that having a sibling with ASD has had an impact on their relationships, particularly during their sibling’s diagnostic process. A 17-year-old TD brother stated “when I first found out about it (sibling with ASD), I didn’t tell anyone. I kept it to myself. (…) I didn’t know how to tell people; I didn’t know how they were going to react…”.
In summary, this theme reflected the ongoing process of the impact of having a sibling with ASD in different aspects of their lives, such as their caregiving role and their personal relationships. They not only perceived an influence in their current situation, such as their present relationship with their friends, but also reflected on how it has affected their past relationships and decisions about their future.
Negative Feelings
This theme reflected the emotional toll or negative impact associated with having a sibling with ASD. Although these negative feelings were not expressed frequently, they were particularly salient. The negative feelings expressed were solitude, anxiety/depression, and anger toward their sibling. Solitude emerged as a direct consequence of having a sibling with ASD. It was defined as a feeling of being alone even when surrounded by people. Feelings of solitude were accompanied by a sense of not being understood and a need to feel listened to.
From the point of view of other siblings, maybe they need to talk and vent about that (referring to having a sibling with ASD) because none of the people I know understand my situation (…). So maybe I need that, too; I need to vent and say, “This is what’s happening to me”, but I don’t know how to do that (19-year-old TD sister).
Other salient feelings were anxiety, depression, and anger. Although these feelings were discussed in general terms, they were usually associated with situations linked to the sibling with ASD and the inability to cope effectively with the negative emotions generated in situations of conflict. These negative feelings emerged more often when the sibling with ASD had either behavioral problems or aggressive episodes, which were seen to erode the relationship. A 12-year-old TD sister said “he hits a lot. When I don’t do what he wants, he hits me. When I’m too angry and stressed, I sometimes bite myself” and a 19-year-old TD sister mentioned “what is worse for me is when he hits me, when he comes to me and tries to hit me when I tell him no. He doesn’t understand when we tell him no. That makes me feel anxious”. In summary, TD siblings expressed negative emotions in certain situations, particularly when conflictive situations emerged or when the relationship with the sibling with ASD was negative; however, they did so rarely.
Siblings in this study perceived an impact on different areas of their personal development, in both a positive and negative manner, which were not mutually exclusive. Some of these areas were related to their personality and identity construction, as individuals who are more tolerant or patient with others, as well as individuals who want to help others. They also reflected on the impact on their social, emotional and cognitive development. For example, some TD siblings mentioned their social relationships and feelings of solitude even when surrounded by others, along with the development of cognitive strategies they found useful to face other stressful situations.
Dyadic Impact
Dyadic impact encompassed themes linked to participants’ feelings of how having a sibling with ASD had impacted their relationship with their sibling and with their parents. We identified two broad themes related to these dyadic dimensions: desire for a “typical” sibling relationship and perceptions of differential parental treatment.
Desire for a Typical Relationship with a Sibling with ASD
This theme referred to the impact that having a brother or sister with ASD had on participants’ relationship with that sibling. Participants sometimes defined their relationship with their sibling with ASD as being different from their relationships with other siblings or from their friends’ relationships with their siblings. They often expressed affection toward their sibling with ASD and generally defined their relationship in positive terms, indicating investment in the relationship. They even highlighted certain advantages such as arguing less or having a warmer and more affectionate connection. These positive feelings were often accompanied by a longing for a more typical relationship. This “normalized” relationship was mostly defined in terms of day-to-day subtleties (rather than significant changes in their relationship).
What was hardest for me was… growing up and thinking “My friends act like older sisters to their siblings, and I act like an older sister too, but in a different way”. Not being able to talk about stuff, for example. But you understand it and accept it, and it’s worth it. Of course, I’d rather he didn’t have autism, but the role I play… I know I wouldn’t have the same relationship with him if he didn’t (23-year-old TD sister).
I always think that if he didn’t have any problem, the small things, such as him saying hello, they wouldn’t have felt like an achievement, and now we are enjoying those little things. On the bad side, obviously I would have preferred for him not to have any problem and to be able to play calmly with him, for him to talk to me and all that (12-year-old TD sister).
Interestingly, some participants not only longed for the positive aspects of a typical sibling relationship, such as confiding in each other but also for the negative ones, such as quarreling or arguing without feeling guilty, or having to behave as the “bigger person”. Even being able to fight back without having to always be in an understanding position. A TD brother (12 years old) stated “sometimes, when my brother is mad, he hits me, and I don’t like it, but I try not to hit him back, and I try to understand why he is mad”. Participants longed for more egalitarian investment in the sibling relationship with their sibling with ASD, where they could perceive a more equal contribution. This longing is common in both adolescent and young adult TD siblings, as in both cases they still lived at home, which is common in the Spanish culture.
I think I feel worse because she has autism; if I had a sister who didn’t have this condition (referring to autism), I’d get mad at her, we’d argue, and then later, we’d talk about it and that would be that. But with her, it’s different. I can talk, but she doesn’t talk back, or I can’t explain to her what happened, and that’s what makes me feel so bad (29-year-old TD brother).
Finally, young adult TD siblings manifested changes in their sibling relationship as a result of reaching adolescence. Most young-adult TD siblings considered adolescence as an important point in their relationship, as the differences became more apparent, along with feelings of drifting apart from each other and lower levels of investment from the TD sibling. “Before, I used to be more present and do more things with her (sibling with ASD), but as time goes by, I do fewer things with her (29-year-old TD brother)”.
When they were younger, it was easier to share games and play together, but in adolescence, going out with friends and sharing other activities became more difficult. However, adolescent TD siblings focused more on the present relationship and not on the changes that might have happened throughout their development.
What I did notice was that there was some distancing between I (sibling with ASD) and me and my friends when we reached the adolescent years; we moved on from him more and more, and we did not pay him much attention, because he had other interests (20-year-old TD sibling).
In summary, TD siblings, despite being generally satisfied with their sibling relationship, perceived differences in their relationship with their sibling with ASD, indicating both positive and negative elements of this relationship. Interestingly, the sibling relationship was expressed in realistic terms, meaning that they did not idealize the fraternal relationship, referring to longing for both the positive and more negative aspects of the sibling relationship. Young adults also provided a developmental perspective, where relationships are not static and change over time, pointing toward adolescence as a relevant developmental stage for both the TD sibling and the sibling with ASD. Although there were shared aspects of the relationships as in both developmental moments they were living together.
They Do Not Treat Us the Same Way
This theme captured how participants perceived their relationship with their parents in comparison with their sibling’s relationship with them. Participants viewed this differential treatment in either a neutral/positive or negative way.
Neutral/Positive Appraisal of Differential Treatment
This subtheme involved participants either attributing the differential treatment perceived to situational factors with no negative connotations or perceiving no differences in how their parents treat them and their sibling with ASD. Most participants perceived at least some degree of differential treatment by parents, with the main focus being differences in the attention received, which they mostly attributed to situational factors. The most common reasons given by participants for the differences were the fact that their sibling with ASD needed more attention or circumstances such as the age difference. They also pointed out that despite those differences, their needs had systematically been met, and they perceived that their parents had highly contributed to the relationship. This child-parent relationship also had particularities due to the fact that even in adulthood, TD siblings were still living at home, as it is frequent in the Spanish culture. Some participants even highlighted the advantages of their parent-child relationship in comparison with that of their sibling with ASD, referring to more bidirectional communication and greater possibilities for being autonomous.
I see that my sister needs more attention than me because I understand more than her and all that, but… I think they treat us the same. I know that if I need their help, they will always be there for me and my brother (other sibling without ASD). But I get that she needs more attention (14-year-old TD sister).
The difference is that they have to behave as if he was a baby; I also get the care that I want, so we each get what we need but in a different way. They haven’t prioritized him, even if they believe so; I don’t have that perception (23-year-old TD sister).
Few participants perceived their parents were totally fair and equal in their treatment. They highlighted the fact that their sibling with ASD was scolded just as much when they argued or were disobedient. “It’s never seemed to me that they pay more attention to me than to him, or the other way around. I certainly don’t feel they are always with him and ignore me” (18-year-old TD brother).
I might feel that they have to dedicate more time to take him to one place to another, but then they have taken me to where I needed to go, so I don’t perceive much difference. Even when we were little and he hit me, they scolded him, and if I hit him, they scolded me (23-year-old TD sister).
In summary, despite the perception of differential parental treatment, the perceived impact of these differences was not negative. The TD siblings in this study rationalized and understood the reason behind these differences, attributing them mainly to situational factors. They also placed great emphasis on their own relationship with their parents as a factor in their positive attribution process.
Negative Appraisal of Differential Treatment
This subtheme reflected participants’ negative experiences of perceived differential treatment by their parents and how they mostly attributed it to personal factors. Although these feelings were less common, a few participants talked about unfair differences between the way their parents treated their sibling with ASD and the treatment they themselves received. These negative attributions were accompanied by negative feelings toward the sibling with ASD. The negative feelings aroused were envy, the sense of being misunderstood, and the sense of not having enough time alone with their parents. The perception of low levels of investment and communication by their parents influenced not only the parent-child relationship but also the sibling relationship. Negative appraisal of differential parental treatment was manifested by TD siblings who expressed negative feelings at a personal level and in a more difficult family climate. A 18-year-old TD sister expressed “envy. It’s not that they take more care of her; they just interpret things differently. Every time there’s a fight, it’s always me, and it’s always my fault. It’s exhausting”. These feelings are shared by both adolescent and young adult siblings, due to the close family ties in Spanish families.
I’m only with my mum at times like now, when my brother is at the beach. She has to go to work; we have some alone time when she gets home, but that’s all the time I have with her. It’s very hard (19-year-old TD sister).
In summary, the perception of differential parental treatment had a negative impact on some TD siblings. Negative feelings often emerged as a consequence of the attribution of these differences to personal factors and were related to the expression of negative feelings at a personal and family level.
At a dyadic level, TD siblings generally expressed a positive relationship with their siblings with ASD and their parents. The fraternal and paternal subsystems appeared to be interrelated but have their own idiosyncrasies. TD siblings expressed negative feelings toward the sibling with ASD as a consequence of a negative appraisal of differential parental treatment. Despite those negative feelings emerging, TD siblings were still able to value the positive aspects of the sibling relationship and desire for a typical relationship.
Family Impact
The family impact category encompasses themes linked to how having a sibling with ASD impacts different aspects of the family unit, such as their rituals and routines. Participants said that having a sibling with ASD influenced their family life and routines. We identified two broad themes related to these family dimensions: everyday life and family climate.
Everyday Life
This theme alluded to the impact perceived by participants on their family routines and the way they organize their daily life (i.e., schedules and family relationships). Most participants stated that one of the areas in which they had noticed a major impact was family leisure activities and rituals, highlighting that these activities had either been limited or changed to now revolve around the person with ASD, thus changing or limiting the investment of the different members in the relationship. TD siblings explained these family leisure activities such as going together on holidays, going out on the weekends as something important for them as a family, which is part of the Spanish culture. Some participants remarked how these limitations had also had an impact on their family’s social life. “The greatest impact has been on going out and doing certain activities, which for us is impossible due to my brother’s condition” (18-year-old TD brother).
Going out with I (sibling with ASD) was easy before, but it has been getting more and more difficult; now we just go to close friends’ and relatives’ houses (…) Long trips? Well… going on vacation is almost impossible; long trips are very hard for him (21-year-old TD brother).
In summary, most TD siblings perceived a certain level of disruption in their daily life as a consequence of having a sibling with ASD, particularly in the organization of family life, including schedules and joint leisure time.
Family Climate
This theme reflected the perceived impact on the family environment. It was defined by participants as the sensation of not being comfortable at home and feeling as if there was not enough space for both them and their sibling with ASD. Those who had a sibling with behavioral problems described the family climate as, at times, chaotic and tense, in comparison with other families’ contexts. This perception was also related to a negative appraisal of parental differential treatment, where TD siblings felt that they received less attention and attributed it to personal factors.
I spend a lot of time with my boyfriend’s family. With them it’s so peaceful; it’s a totally different atmosphere. They can all be on the sofa together, talking and such, each one in their own place. But my brother, he needs his space, and I have to be in my room almost all the time, because… how can I put it? Sometimes I just don’t feel comfortable (19-year-old TD sister).
Some participants remarked that their family unit had been strengthened as a result of having a sibling with ASD, stating they have become closer to each other and have learned to present a united front when faced with adversity and difficulties, displaying higher levels of communal orientation, which is perceived as highly positive in the Spanish culture. These feelings of increased family cohesion and communal orientation were found to be related to not only positive appraisals of differential parental treatment based on situational factors but also to an increase of the likelihood of TD siblings investing in their relationship and being satisfied with the attention and care received by their parents. A 18-year-old TD brother stated “it’s also true that this situation has helped us a lot as a family. We’ve become closer because we’ve always felt that we need to deal with everything together”.
At the family level, most TD siblings perceived a certain level of disruption in their family life, particularly concerning the organization of their daily life and the time spent in family leisure time, with perceived needs for more joint activities. In addition, the perception of the family environment was found to be negatively affected by the presence of behavioral problems and possible difficulties in the parent-child relationship.
In summary, having a TD sibling had an impact on different elements of the family environment. On the one hand, it affects the general climate, with the perception of stressful and chaotic situations, particularly when there are behavioral difficulties. On the other hand, it had a positive influence on the perception of family cohesion, with TD siblings perceiving higher levels of family union as a consequence of the difficulties faced by their families. Family climate could be particularly relevant in Spanish culture, as intergenerational and long-term cohabiting is frequent.
Discussion
The aim of this study was to provide insight into the experiences and perspectives of TD siblings living with a sibling with ASD, as it is one of the most significant and long-lasting relationship in a person’s life (Feinberg et al., 2012; Orsmond & Seltzer, 2007). In general, results showed that, rather than describing their experiences in more unitary terms, TD siblings perceived a significant impact at different levels. These results confirm the need to reinterpret the construct of impact in absolute terms. Results from this study indicate that the impact of having a sibling with ASD could be considered continuous. TD siblings identify positive aspects of having a sibling with ASD, such as personal growth or more family union, while at the same time desiring a typical relationship with their sibling with ASD and more family leisure time. Our findings suggested that impact should therefore be considered a multifaceted rather than unitary construct (Keirsey, 2016), and as such, each area should be assessed and targeted specifically. Similar to results from other studies with families of individuals with ASD (e.g., Leedham et al., 2020; Watson et al., 2021), the narratives of our participants illustrated a wide range of experiences, reflecting the complexity of their relationship with their sibling with ASD.
Findings concerning the related impact at an individual level were consistent with those of previous studies that have examined the TD siblings of individuals with ASD with a focus on the impact on their personal growth (Leedham et al., 2020; Watson et al., 2021). At an individual level, results from this study mainly point toward resilient elements in TD siblings, while others indicate the presence of negative emotions. The results indicate that some TD siblings thrive under such stressful circumstances by broadening their perspective and learning new skills and coping strategies (Feeney & Collins, 2014), while others express negative emotions or allude to negative impacts at different levels. TD siblings who expressed negative emotions highlighted the presence of behavioral problems or aggressive episodes as a key-crosscutting factor, consistent with literature on the influence of behavioral problems on TD siblings’ adjustment (Lovell & Wetherell, 2016; Shivers et al., 2013; Walton, 2016). Differences in the experiences of these siblings could be explained in relational terms. Behavioral disorders and conflictive situations within the family system could lead to an erosion of the relationship, which could lead to loneliness, depression and general dissatisfaction (Afifi et al., 2022).
In addition, TD siblings have to take on more responsibilities (Leedham et al., 2020; Corsano et al., 2017; Gorjy et al., 2017; Watson et al., 2021). However, most TD siblings perceived those added responsibilities to be natural, not considering them a burden. TD siblings who have experienced more relationship maintenance patterns,as a result of repeated positive relationship experiences with their parents and siblings with ASD, could be more willing to accept this caregiving role and develop resilience processes characterized by personal growth (Feeney & Collins, 2014).
Results could also be influenced by cultural elements, such as the presence of familistic values (Calzada & Brooks, 2013; del Valle et al., 2013), and the specific characteristics and traditions of the Spanish context (Eurostat, 2021; López, 2010). Other studies that have examined TD siblings with familistic values have emphasized their acceptance of not only the caregiving role but also of their obligations toward supporting their family (Long et al., 2021). TD siblings from cultures with familistic values could need less explicit validation from their caregiving role than those from other cultures and thus be more prone to communal orientation. In addition, negative narratives were not frequently found in our results, particularly at a personal level. This outcome is consistent with other studies on familistic cultures, where Latino TD siblings were found to express fewer negative emotions toward their sibling with ASD (Long et al., 2021); however, it is not clear yet whether these individuals feel fewer negative emotions or instead have more difficulties expressing them (Long et al., 2021). The expression of negative emotions toward a sibling with ASD might be perceived as less desirable and reflect lived-with guilt in Spanish culture, where taking care of one’s family members is embedded within the culture.
At a dyadic level, TD siblings perceive an impact in the fraternal and paternal subsystems. Related to the fraternal subsystem, similar to reports by other studies, some participants expressed their wish for their sibling to be cured or not to have ASD (e.g., Safran, 2017). Interestingly, most participants’ desires were focused on the interaction component of the sibling relationship rather than on changing the characteristics of the person with ASD. As sibling relationships are non-elective but still relevant for the individuals (Feinberg et al., 2012) the focus is on improving the interaction. Additionally, TD siblings in this study seem not to argue as typical siblings. The rivalry and support in the relationship, is part of the typical sibling relationship and is part of horizontal relationships (Barak-Levy et al., 2010), and as such part of their development (McHale et al., 2016).The use of strategies such as being understanding, feeling guilty, or being the bigger person could result in conflict resolution and communication competencies developing differently, which in turn may lead to the qualitatively different development of TD siblings of individuals with ASD. It is important to highlight that while the use of these strategies might ensure a positive or non-conflictive relationship in the short or medium term, it might cause frustration in the long term, leading to negative emotions toward the sibling or distancing. These results emphasize the importance of communication as a key factor in relationships and the need for TD siblings to learn strategies and effective ways of having a satisfactory relationship with their ASD sibling, incorporating daily life actions that improve their relationship maintenance.
In relation to the parental subsystem, most TD siblings in our study indicated that they had indeed perceived differential treatment, which is consistent with other studies focusing on TD siblings of individuals with ASD (Cridland et al., 2016; Corsano et al., 2017; Leedham et al., 2020; Tsai et al., 2018; Ward et al., 2016). However, informants focused mainly on their assessment of these differences and on their attribution rather than on the differential treatment per se. Our findings point toward the indirect influence of parents on the impact of having a sibling with ASD. More specifically, two parenting components were identified as core elements in the appraisal of differential treatment. First, responsiveness to the TD sibling emerged as one of the most relevant factors in neutral and positive appraisals, along with an acknowledgment of the different needs of the person with ASD. Second, discipline was also perceived as a relevant factor in the assessment of differential parental treatment, particularly in association with negative appraisals. Specifically, when TD siblings perceived discipline to be directed exclusively at them, they assessed differential treatment negatively, and negative emotions arose as consequences. This insight by TD siblings could reflect their internal distinction between differential and unfair treatment, which could be a key distinction to analyzing the related impact on the adjustment of TD siblings and their perception of the parent-child relationship, and even the sibling relationship. Other studies indicated that perception of fairness in the differential treatment had a more positive appraisal of the sibling relationship (Kowal & Kramer, 2006). Thus, it seems that TD siblings’ perceptions of their own child-parent relationship in absolute terms, defined as the level of affection and control a child perceives from their parents (Scholte et al., 2007), are more important than the comparative relationship. The perception of responsiveness and availability from parents, consistent with positive parenting competences (Rodrigo et al., 2015), could be a key element to the ongoing investment of parents in the parent-child relationship. In addition, the validation and building of positive emotion in TD siblings, could increase the probability of a broader and less negative appraisal of differential parental treatment. This is consistent with studies indicating that high levels of relational maintenance behaviors from parents are related to lower levels of stress in adolescents (Afifi et al., 2020). The validation of the TD sibling, open communication, and taking interest in the daily life of the TD sibling could be important strategies to help reduce the perceived negative impact of having a sibling with ASD.
These results could also reflect the fact that perceived differential parental treatment could be a common occurrence in families with more than one child, especially with siblings who perceive a nonegalitarian investment and contribution from their parents. As such, the negative impact of receiving less attention in families with children with ASD, the negative impact on family climate, or the sibling relationship could be related to factors other than the presence of a person with ASD in the family. For example, the presence of the broader autism phenotype in parents is related to a more negative emotional family climate (Hickey et al., 2019), while higher levels of critical expressed emotion in the family are related to a more negative sibling relationship (Petalas et al., 2012).
The perception and appraisal of differential parental treatment could indicate that there are some processes in families of individuals with ASD that are normative; thus, differences might be found in the intensity of the feeling rather than being qualitative in nature. Despite the processes being similar, the appraisal and the reasons behind the appraisal could differ between families of individuals with ASD and other populations with TD siblings using the situational reappraisal of differential parental treatment, as a mechanism to positively adapt to the situation.
Finally, in the present study, one of the most salient emerging themes was the impact of having a sibling with ASD on everyday family life. Consistent with other studies that have mentioned the impact on families’ daily lives (Cridland et al., 2016; Gorjy et al., 2017; Keirsey, 2016; Petalas et al., 2009), the TD siblings in this study attached great importance to this area, highlighting, in particular, a significant decrease in shared leisure time; a great number of other studies of families of individuals with ASD have also emphasized the loss of social leisure time outside of the family (see Watson et al., 2021). Prior research has not only shown the importance of family leisure as a means of fostering interactions among family members (Zabriskie & McCormick, 2001) but also highlighted its association with family cohesion, family quality of life, and individual well-being (Zabriskie & McCormick, 2003). Family leisure time is a way of spending quality time together, which is a way of relational maintenance. Thus, increasing the amount of family leisure time could be a way of increasing the related emotional reserves and promoting a communal perception of the family, which is related to more positive relationships within the family. The core and balance model of family leisure functioning (Zabriskie & McCormick, 2001) argues that there are two types of family leisure activities. The first is related to everyday shared leisure time, such as watching TV together. The second has to do with less common or extraordinary leisure time, such as taking vacations or going out on weekends. Although the TD siblings in our study mentioned that living with a person with ASD had an impact on both types of family leisure activities, they placed greater emphasis on the out-of-the-ordinary ones. It is important to note that the extraordinary family leisure activities described above are fairly frequent and very important in Spanish culture (INE, 2008; INE, 2018). These particularities could explain the relevance of this theme for Spanish TD siblings and the perception of dissatisfaction with family leisure time. Interestingly, despite the perception of there being a lack of family leisure time, the relationship with their parents and siblings was generally perceived as positive, and most TD siblings considered their needs as being met; this is consistent with previous studies that have emphasized the quality rather than the quantity of shared leisure time (Walton, 2019) for the fostering of positive family interactions and promoting relational maintenance.
There were several factors that were found to influence the perception of impact by TD siblings in this study. One of the most important ones was the manifestation of behavioral problems by the individual with ASD, which could increase the level of stress in the family context, thereby facilitating the depletion of the emotional reserves of the TD siblings; this is in turn related to a more negative and chaotic family climate in general. In addition, the relationship and communication in the parent-child dyad seem to reflect factors that influence not only the perception of differential parental treatment but also the promotion of positive family climate and relationships. Difficulties in the parent-child relationship have been proven to influence the sibling relationship and facilitate the emergence of negative feelings (Rivers & Stoneman, 2008). Also, the perception of fairness in differential parental treatment has been related to a more positive assessment of the sibling relationship (Kowal & Kramer, 2006). Finally, cultural factors, such as familism as a cultural value and the relevance of extraordinary family leisure activities in Spanish culture, could influence the expression of negative emotions, the perception of the caregiving role, and the relevance of and demands placed on the family.
Limitations
The present study has some limitations, one of the most important being the method used to recruit TD siblings and the wide age range of the siblings with ASD. Potential participants were contacted through their parents, meaning that those with a more negative relationship with their parents or siblings with ASD may have been overlooked. It would also be interesting to include more than one type of informant and to limit the age range, even perhaps exploring the specific impact of and relationships within the adolescent TD sibling and adolescent sibling with ASD dyad, as the fact that participants were at different life stages could have influenced the results. Moreover, longitudinal studies addressing the evolving nature of sibling relationships are needed to explore how the impact on and relationships within families change throughout the different stages in the family life cycle. Longitudinal studies would also allow for a better understanding of intrafamily changes.
Practical Implications
These results help identify some practical implications concerning general aspects of the support provided to TD adolescents and adults with siblings with ASD, as well as some relevant content that could be directly addressed in interventions with this population. Regarding the general aspects, first, it is important for TD siblings to have the opportunity to vent and express their concerns. It is also important to provide TD siblings with strategies for coping with stressful situations and the behavioral problems of the sibling with ASD, as well as training in communication strategies as ways of solving conflicts and prevent distancing with the sibling with ASD.
Interventions targeting the whole family should be considered to address family shared leisure time; possibilities for help and resources should be offered in this regard. Also, interventions should target relationships within the family and not only focus on the TD sibling.
In conclusion, this study has highlighted that although there are commonalities between studies from different cultures, some results are particularly relevant in the Spanish context due to the possible influence of familism as a cultural value, as well as other cultural aspects. Fewer negative narratives, participants’ longing for the typical components of sibling interactions, and an emphasis placed on out-of-the-ordinary family leisure activities are important findings for the specific Spanish context. It is critical to continue exploring the experiences and perceptions of TD siblings from different cultures and contexts to improve the provision of support and the specificity of the resources available in each cultural context.
In addition, although most of the participants perceived differential parental treatment, it is vital to consider the relationship between TD children and their parents as a core element related to the appraisal and attributions of those differences, attaching particular importance to parenting components such as responsiveness and discipline. Thus, it is critical to explore in more detail parenting components associated with the adjustment and experiences of TD siblings, to understand better the family dynamics, and design integrated interventions for these siblings.
Compliance with Ethical Standards
Conflict of Interest
The authors declare no competing interests.
Ethical Approval
This study involves human participants. Parents of underage participants explicitly consented to their participation. Every informant participated in the study voluntarily, after signing an informed consent document. Approval from the ethics committee was obtained (1517-N17).
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