How my life is unique: Sibling perspectives of autism

Abstract

The impact of autism on the family is an area of study that merits further research attention. Much of the existing literature has focused on the parent perspective, with less emphasis on the experiences of other family members, particularly non-autistic siblings. This study aimed to explore the lived experiences of a sample of nine 8- to 17-year-old non-autistic siblings of children and youth on the autism spectrum. We interviewed siblings and analysed transcripts using interpretative phenomenological analysis. Our results revealed the following Group Experiential Themes: (1) Role disparities, different expectations; (2) Connection and disconnection; and (3) Our family is (extra)ordinary. Our study findings highlight the unique and collective perspectives of siblings regarding their brother or sister on the spectrum within the broader family dynamic. We discuss the implications of these results on siblings of autistic children and youth.

Lay abstract

The impact of autism on the family is an important area of study. Much of the existing literature has focused on the parent perspective, with less emphasis on the experiences of other family members, especially non-autistic siblings. This study aimed to explore the lived experiences of a sample of nine 8- to 17-year-old non-autistic siblings of children and youth on the autism spectrum. We interviewed non-autistic siblings and analysed the written transcripts. Our results revealed the following themes: (1) Role disparities, different expectations; (2) Connection and disconnection; and (3) Our family is (extra)ordinary. Our study findings highlight siblings’ unique and collective perspectives regarding their brother or sister on the spectrum within the broader family unit. We discuss the implications of these results on siblings of autistic children and youth.

Keywords

autism spectrum disorder family interpretative phenomenological analysis sibling

Autism and the family

Having a family member on the autism spectrum impacts the entire family across the lifespan in both negative and positive ways. An autistic child may reduce available family resources given the child’s unique physical, emotional, or behavioural needs (Cidav et al., 2012; Kogan et al., 2008; Rogge & Janssen, 2019). Children on the autism spectrum may require additional assistance with basic care needs (e.g. toileting, personal hygiene), resulting in more parental time and attention than non-autistic siblings (Gorjy et al., 2017; Heiman & Berger, 2007). Heightened care needs may be especially pertinent to families with an autistic child with complex needs, including those with co-occurring intellectual disabilities (Marquis et al., 2019). In circumstances where caregiving demands are greater, this may limit employment opportunities and constrain family household income, decreasing family participation in social or recreational opportunities (Cargan et al., 2011; Rogge & Janssen, 2019). These barriers may exacerbate caregiver stress and decrease quality of life (Al-Krenawi et al., 2011). Beyond the negative implications reported throughout the literature, researchers have examined positive experiences of having a family member on the autism spectrum. In a study by Myers et al. (2009), parents considered their child’s autism as a ‘blessing’ (p. 673) and a ‘gift from God’ (p. 673). Other parents expressed that while having a child on the autism spectrum was stressful, the experience ‘made [them] better’ (p. 673). Parents of autistic children have reported greater awareness, connectedness to others, tolerance, and compassion for people with disabilities (Bayat, 2007; Myers et al., 2009). Together, these studies highlight varied experiences of parenting autistic children.

Siblings

While much of the existing literature has focused on parent perspectives of autism, the experiences of other family members, namely siblings, merit further consideration. The sibling relationship is critical given that siblings engage in regular and often intimate interactions that can outnumber those with other peers or family members. Through these shared experiences, siblings can become important sources of learning and support for one another (Healy, 2018). Beginning in childhood, siblings help each other learn social skills through play. As siblings grow up together, support can take the form of friendship, emotional comfort, information, or advice (Healy, 2018; Mikkelson et al., 2011). This support system is significant as the sibling relationship is one of the longest relationships in one’s life (Salmon, 2015).

The complexities of the sibling relationship can be understood from a family systems framework (White & Klein, 2008), originating from Von Bertalanffy’s (1967) general systems theory and Bronfenbrenner’s (1977) ecological systems theory. This theory emphasizes the dynamic and bidirectional interactions between family members (individuals, relationships within the family, the family as a unit) and their environments. Cridland et al. (2014) underscored the utility of family systems theories as a conceptual framework to guide family-focused autism research. The sibling relationship comprises an important subsystem within the family unit, where siblings influence each other, the family unit, and broader social contexts. As the influence of the sibling relationship on non-autistic siblings continues to gain empirical attention, researchers have explored various outcomes of these unique family relationships.

Negative relationship experiences

Researchers have identified unique negative influences on non-autistic siblings across the lifespan. Neurotypical siblings have reported an increased sense of responsibility towards their autistic siblings. For example, increased responsibilities include caring for their autistic sibling (e.g. Pavlopoulou & Dimitriou, 2020), babysitting the sibling on the spectrum (e.g. Ward et al., 2016), taking on greater family responsibilities than their siblings (e.g. Gorjy et al., 2017), and assisting their sibling with activities of daily living (Leedham et al., 2020). In Cridland et al.’s (2016) study, some non-autistic siblings in their sample reported experiencing burnout related to greater responsibilities across multiple environments (i.e. school and home), limited appreciation from their autistic siblings, and occasional punishment (e.g. criticism) for attempting to help. Responsibilities may occur more frequently with increasing age (Gorjy et al., 2017), when parents are tired (Corsano et al., 2017), or during a behavioural crisis (Corsano et al., 2017). For autistic siblings with elevated support needs, responsibilities on the non-autistic siblings may be even greater.

Beyond potential difficulties experienced as a result of increased responsibilities, there may be other negative impacts on neurotypical siblings. Negative influences on the non-autistic siblings’ mental health (Jones et al., 2020), self-esteem (Habelrih et al., 2018), feelings towards their autistic sibling (e.g. Pavlopoulou & Dimitriou, 2020), and other social relationships (Corsano et al., 2017) have been reported. Children not on the autism spectrum have reported sacrificing activities or plans to help care for their autistic siblings (Corsano et al., 2017; Leedham et al., 2020). These difficult experiences can limit their social opportunities (Barak-Levy et al., 2010; Ferraioli & Harris, 2010) and increase adverse social reactions or feelings of embarrassment towards their sibling on the spectrum (Angell et al., 2012; Mascha & Boucher, 2006; Pavlopoulou & Dimitriou, 2020; Petalas et al., 2012). Some children have reported that they are often embarrassed because of their siblings’ unpredictable (Mascha & Boucher, 2006), aggressive (Mascha & Boucher, 2006), or ‘weird’ behaviour (Petalas et al., 2012, p. 1492). As a result, non-autistic siblings may avoid interacting with familiar people in the community and inviting peers to their homes, which may negatively impact the development or maintenance of their own friendships (Corsano et al., 2017).

As siblings age, embarrassment may wane and worry about their autistic siblings’ future may increase (Angell et al., 2012; Corsano et al., 2017; Leedham et al., 2020; Mascha & Boucher, 2006; Petalas et al., 2012). Mascha and Boucher (2006) interviewed 14 non-autistic siblings (ages 7–20 years) about their experiences of having a sibling on the spectrum. Many siblings expressed anxieties about their siblings’ futures, some did not worry often but thought about their siblings, and a few siblings rarely thought about the future. Petalas et al. (2012) also interviewed non-autistic siblings (12 young people, ages 9-17 years). One-third of their sample frequently worried about their siblings’ future. Specifically, non-autistic siblings have been concerned about potential bullying (Mascha and Boucher, 2006; Petalas et al., 2012), future employment of their siblings (Mascha and Boucher, 2006; Petalas et al., 2012), siblings’ living and care arrangements (Corsano et al., 2017; Mascha and Boucher, 2006; Petalas et al., 2012), and their siblings’ safety and independence given their adaptive functioning difficulties (e.g. safety skills; Angell et al., 2012). Furthermore, protectiveness of the autistic sibling has been reported by both non-autistic siblings and their parents (Leedham et al., 2020; Schmeer et al., 2021). In adulthood, siblings may be apprehensive about their siblings’ long-term care and experience guilt about not helping (Moss et al., 2018).

Positive relationship experiences

Despite acknowledging the challenges some neurotypical siblings associate with having a sibling on the autism spectrum, positive experiences have also been reported. Recently, Watson et al. (2021) reviewed 15 qualitative studies focusing on siblings of children on the spectrum. The results of their thematic analysis suggested various ways in which non-autistic siblings’ experiences positively influenced their sense of self, personal development, interactions with their autistic siblings and others, and ability to cope with difficulties associated with having an autistic sibling.

Although non-autistic siblings may experience an increased sense of responsibility negatively, they may also experience it positively. Research on non-autistic sibling attitudes about additional obligations has varied (e.g. positive: Barak-Levy et al., 2010; negative: Ferraioli & Harris, 2010; mixed: Cridland et al., 2016; Gorjy et al., 2017). Non-autistic child and adolescent siblings have reported a heightened positive sense of responsibility and concern for their siblings’ safety and social well-being (Angell et al., 2012). These responsibilities may persist over the lifespan and include advocating for their autistic sibling (e.g. Pavlopoulou & Dimitriou, 2020). Interestingly, cultural factors may influence how siblings qualify and make sense of their sibling experiences (e.g. Tsai et al., 2018), including perceptions about their responsibilities.

Empirical studies highlight other positive interpersonal and emotional experiences associated with having an autistic sibling. Schmeer et al. (2021) found that most non-autistic siblings reported positive relationships with their autistic siblings and others and learning intrapersonal (e.g. patience, understanding) and interpersonal skills (e.g. understanding the qualities of others they want to spend time with) from their siblings. In a photoelicitation study by Latta et al. (2014), non-autistic siblings reported positive perspectives of and experiences with their autistic siblings (e.g. ‘. . .my favourite little brother’; playing, having fun). Siblings have also described their brothers’ or sisters’ positive personal characteristics (e.g. happy, fun, nice; Mascha & Boucher, 2006; Petalas et al., 2012; Ward et al., 2016). They have expressed their love towards their siblings (Angell et al., 2012; Gorjy et al., 2017; Ward et al., 2016), pride in their siblings’ accomplishments (Angell et al., 2012; Petalas et al., 2012), and general acceptance of their siblings (Angell et al., 2012; Gorjy et al., 2017). Siblings not on the autism spectrum have reported a greater sense of maturity and understanding due to having a sibling on the spectrum (Mascha & Boucher, 2006). Studies have shown that siblings understand that their families are different from families that do not have an autistic child, but with some adjustments, they successfully adapt (Cridland et al., 2016; Gorjy et al., 2017).

Present study

Overall, the sibling relationship is a unique dynamic in the family that persists throughout the lifespan. While there is growing momentum and interest in the relationship experiences of siblings of autistic children and youth, there are opportunities to further our understanding of the sibling relationship using dialogical, qualitative research methodologies. Cridland et al. (2014) recommended that autism researchers use qualitative approaches supported by family systems frameworks to study the family unit from the sibling perspective. Collectively, recent qualitative and quantitative studies have identified both positive and negative experiences of siblings. Further insights from the perspectives of non-autistic siblings will enhance our current understanding of families with a child or youth on the autism spectrum and supports that may be of benefit to non-autistic siblings. Therefore, the research question that guided our inquiry was: what are the lived experiences of siblings of children and youth on the autism spectrum?

Method

Research design overview

We used a qualitative research approach to understand the experiences of siblings of autistic children and youth. Qualitative inquiry allows the investigation to be on the qualities of a phenomenon of interest rather than quantitative aspects of the phenomenon, such as experimental manipulation (Denzin & Lincoln, 2000). We adhered to an interpretivist paradigm (Willis, 2007) whereby we understood the personal experiences of siblings of children and youth on the autism spectrum through participants’ meaning-making of their narratives and our researcher interpretations of those lived experiences. We incorporated a phenomenologically-rooted methodology, interpretative phenomenological analysis (IPA; Smith et al., 2022; Smith & Fieldsend, 2021), to explore the lived experiences of our research participants.

Researcher characteristics and reflexivity

The first author worked in clinical and research capacities with autistic children, youth, and young adults and their families for approximately 20 years during the project. The first author conducted the participant interviews. Inspiration for the present study was sparked while the first author was working clinically with a family in a home-based therapeutic programme for an autistic child. The non-autistic sibling was regularly around during various in-home therapy sessions. The first author became curious about the experience of an autistic sibling, which initiated the present study. The co-authors were graduate students at the time of the study and engaged equally in the analytic process using IPA under the supervision of the first author. Relevant to the present study, the first and second authors were only children (i.e. no siblings) and all remaining co-authors had at least one sibling. Our professional and personal positioning as individual researchers influenced all aspects of study conceptualization, data collection, and interpretation. While the co-authors did not directly interact with study participants, they engaged deeply with the data alongside the first author through the cyclical and iterative interpretive processes inherent in IPA, individually and together as a research team.

Participants

For IPA studies, researchers recommend relatively small sample sizes (e.g. 8-10 participants for a doctoral dissertation; Smith & Fieldsend, 2021). In a well-executed IPA study, the emphasis is on a thorough analysis with a ‘reasonably small sample size rather than a superficial analysis of a large number of people’ (Smith & Fieldsend, 2021, p. 150). The goal of an IPA study is to understand the personal lived experiences of participants who provide researchers with access to a particular phenomenon of interest, and in this context, the sibling experience (Smith et al., 2022). Given the idiographic nature of IPA, the focus of study is on ‘understanding particular phenomena in particular contexts’ (Smith et al., 2022, p. 43) with small samples.

Nine neurotypical siblings of children and youth on the autism spectrum participated in the present study. Five siblings were male, ranging in age from 8 to 17 years old (mean age = 12.2 years). All autistic siblings were male, except for one. Autistic children and youth were between 9 and 17 years old (mean age = 13.2 years). All siblings were biologically related. See Table 1 for additional details. It should be noted that in the present study, we collected relatively minimal demographic data. We recognize the value of including demographic information on variables such as the complexity of need or presence of an intellectual disability of the autistic sibling. Anecdotally, the first author was informally introduced to the autistic sibling while conducting the sibling interviews (either before, during, or after). All autistic siblings represented in this sample appeared to have difficulties with vocal language expression, including two autistic siblings who used augmentative or alternative communication methods, as described by the families during the interviewer’s visit.

Table 1.

Family and participant characteristics.

Family	Participant Pseudonym	Sibling (Gender)	Sibling age (years)	Child or youth on the spectrum (Gender)	Age of autistic sibling (years)
1	Selena	Female	10	Male	12
2	Max	Male	14.5	Male	17
3	Sebastian	Male	16	Male	14
4	Emily	Female	8	Male	12.5
5	Pauline	Female	8	Female	15
6	Nadine	Female	15	Male	13
7	Toby	Male	11	Male	13
8	Matthew	Male	10.5	Male	9
9	Braden	Male	17	Male	13

Participant selection and recruitment

Homogeneous, purposive, and snowball sampling approaches were used to investigate the context shared by our participants (Smith & Fieldsend, 2021). Our strategy was purposeful because we were looking for ‘information-rich cases for in-depth study’ (p. 182) to learn about the phenomenon of interest (Patton, 1990). The inclusion criteria for the present study were as follows: (1) child or youth participant between the ages of 8- and 18 years-old, (2) sibling of a child or youth with a parent-reported autism spectrum disorder diagnosis, and (3) two-child household (i.e. autistic sibling and non-autistic sibling). Families were initially contacted by distributing online study flyers at autism organizations. Using a subsequent snowball sampling strategy, we asked the families to identify other information-rich informants. Interested participants contacted the researchers by phone or email. There was no community involvement in the reported study.

Data collection

The first author conducted all interviews, which were approximately 30 min in length, an appropriate interview duration for children (Curtin, 2000). All interviews were conducted in the families’ homes. Before starting the formal interviews, the first author completed the consent process with the parents and assent with the sibling. We obtained written consent from parents and assent from non-autistic sibling participants. We received ethics clearance from the University’s research ethics board.

The first author then engaged in small talk with the child or youth before starting the interview to build rapport and ensure as much as possible that the participant was comfortable. All interviews proceeded in a way where the child or youth’s lead was followed – play-based (at the table, on the floor) or sitting at a table. Parents were present at the table for two participants during the entire interview. A face-to-face semi-structured interview format comprised of mainly open-ended with some closed-ended questions was used to guide the interviews flexibly. The first question was intentionally broad to allow the sibling to begin sharing their experience at their own pace, and questions were more focused on capturing a detailed depiction of each child or youth’s lived experience.

The interview guide included the following questions, which were central to the phenomenon of interest: (1) ‘What is it like to be (sibling)’s brother/sister?’, (2) ‘Tell me about [brother/sister]?’, (3) ‘What is it like to have a brother/sister on the spectrum?’ (4) ‘How do you and [brother/sister] get along?’, (5) ‘How might things be different if [brother/sister] wasn’t on the spectrum?’, (6) How might things be the same if [brother/sister] wasn’t on the spectrum?”, (7) “What’s it like to be a member of your family?”. The wording of each question was slightly adapted depending on the age of the sibling. The first author asked additional questions to gather a descriptive perspective of each participant’s experience. Some questions were asked to clarify narratives (e.g. “Just to make sure I got it right, do you mean…”.) and to elaborate on experiences described (“Could you tell me more about…”., “What happened next?”). The first author added statements of encouragement throughout each interview (e.g. “That’s interesting”, “I see”, “um hm”) to ensure that participants were comfortable sharing their perspectives.

Each interview was digitally recorded using a freely available online programme (Express Scribe; NCH Software, 2010) and transcribed verbatim. The transcripts also intentionally included micro-details of talk (e.g. um, ah, uh). We included these speech elements to highlight emotional indices that may not be captured when micro-details of talk are excluded (Gardner, 2001).

Analysis

We used IPA (Smith et al., 2022) to analyse the interview data. The analytic process began with transcription, where the first author listened to interview recordings and transcribed them verbatim. Transcription is a critical aspect of data analysis because it allows the researcher to become familiar with the data (Riessman, 1993). Each narrative was examined case-by-case, whereby each written transcript was analysed in its entirety before moving on to a subsequent transcript. This case-by-case analysis was critical to ensure that the analysis was grounded in each participant’s experience (Smith, 2004). Consistent with IPA, we analysed the data through a double hermeneutic process (Smith & Osborn, 2003), where we attempted to understand and make sense of the siblings’ experiences while they, themselves, were making sense of their own experiences. Although we started our transcript analysis with a case-by-case approach, we revisited all the transcripts at various points throughout this process, consistent with the iterative and inductive cycle described by Smith (2007).

All researchers were involved in data analysis. The first author was the lead analyst. Because the co-authors were learning to conduct IPA, they independently read and analysed the transcripts and participated in group discussions at various stages of the analytic process. As outlined by Smith et al. (2022), the following seven stages were used to guide our analysis: (1) reading and re-reading the first transcript or case, (2) engaging in exploratory noting (i.e. all authors independently noted anything of interest within the first transcript using the Comments feature in Word, followed by a research team discussion on early-stage annotations as recommended by Smith et al., 2022, p. 85), (3) constructing experiential statements (i.e. authors constructed statements closely connected to the exploratory notes and relevant components of the original transcript and discussed them as a group), (4) searching for connections across experiential statements (i.e. making connections between experiential statements that allowed us to highlight the most interesting and relevant aspects of the participant’s experiences), (5) labelling Personal Experiential Themes and consolidating the information in a table (i.e. developing themes), (6) conducting the individual analysis of remaining interviews to produce an idiographic account of each participant’s personal narrative, and (7) developing Group Experiential Themes (i.e. identifying similarities and differences across Personal Experiential Themes to create experiential themes for the sample of participants at team research meetings).

Trustworthiness

Trustworthiness, or the methodological integrity of the data, was established using various strategies (Brantlinger et al., 2005). Collectively as a research team, we have considerable experience working with people on the autism spectrum and their families and acknowledge how these experiences may have influenced our assumptions, beliefs, and biases about sibling relationships where one sibling has an autism diagnosis (researcher reflexivity). Research co-investigators began the analytic process by independently reviewing and taking notes on the transcripts, then subsequently participated in three team coding meetings facilitated by the first author (collaborative work; investigator triangulation). Throughout the analytic process, inconsistencies across cases regarding experiential themes were discussed and explored (negative case analysis). All analyses were grounded in the study results (thick, detailed description); we included direct quotes to support the experiential themes, which were comprised of the unique experiences of siblings in our sample and our interpretations of those experiences. We subsequently shared our final analysis with study participants for feedback on our interpretations (second level member check).

Results

The results of the analysis revealed the following three Group Experiential Themes across cases: (1) role disparities, different expectations; (2) connection and disconnection; and (3) our family is (extra)ordinary. Each theme is described below with supporting quotes.

Group Experiential Theme 1: role disparities, different expectations

Participants described the disparities between their roles within the family and the expectations of them compared to those of their siblings on the autism spectrum. Participants reported helping their parents supervise their siblings. They acknowledged that because their brother or sister often required extra parental support, non-autistic siblings regularly completed daily activities independently. For example, Pauline stated, ‘Umm. She, [my sister], goes up to get ready for the bus, my parents help her. Um. And I usually have to make my own breakfast’. In this statement, Pauline explained the differential expectations between her and her sibling: her sister received parental support, while Pauline was usually expected to independently prepare her meal. This contrast in expectations was also evident in Selena’s narrative, in which she described the family’s expectations of her compared to her autistic brother. She explained how she and her brother would get home from school: ‘I walk home but he gets drove back in a minivan’. Note the sibling’s use of the word ‘but’, which further underscored their different experiences of getting home from school.

Household responsibilities

Non-autistic siblings reported additional household duties relative to their autistic siblings. Selena stated: ‘Mom tells me to help her, and I’m like, ‘[brother]’s not helping’ [chuckling] . . .I do it, I carry the groceries always. Usually when he does help he carries one really, really light bag in, and leaves [chuckling]’. Within this family system, Selena appeared to carry a heavier load, relative to her sibling. These relatively greater expectations of on her to help the family relative to her sibling were underscored by her unwavering statement: ‘I do it, I carry the groceries always’, suggesting that she accepted the additional duties. In another example, Braden described a past situation that highlighted the dissimilar expectations between him and his sibling:

Yeah, when I was younger my parents told me that I couldn’t do something and then I saw [my brother] go off and do it. And I said, ‘Well, why does he get to do it?’, and they explained to me, ‘Well he doesn’t understand because he has difficulties’, and then I said to them, ‘I wish I had difficulties’, which I didn’t actually mean it, I was just saying it like, that way I could do things and I could get away with it. And then my dad explained to me, ‘Well you don’t wish you had that. You have no idea how lucky you are that you don’t have any difficulties, or you know, any allergies or anything’

In this excerpt, Braden went head-to-head with the family’s status quo expectation and openly and directly questioned the differential. The parents responded by providing him with a reason (i.e. ‘he doesn’t understand.’..) and perspective on the circumstance ( ‘You have no idea how lucky you are.’..). Braden later described how he developed an understanding of his brother’s differences and support needs, demonstrating his eventual insight into why his parents treated him and his autistic brother differently. Sebastian also articulated his frustrations with his sibling regarding household duties: ‘Like if you’re trying to get him to do something and he can’t figure out what it is that you want him to do, that can be frustrating and stuff so.’. . . In this excerpt, Sebastian implied that his brother’s support needs influenced the expectations on each sibling to carry out tasks and responsibilities within the family household, which was similar to the experiences of other sibling participants.

Caregiver, nurturer

Non-autistic siblings described adopting a caregiving and sometimes nurturing role towards their autistic siblings. For example, Nadine discussed watching over her sibling, ‘Ummm, well. Usually I watch him. Babysit him. Um [sighs]’. Here, Nadine described caring for her brother, using the term ‘babysit’, specifically. There is an uncomfortableness to how she expressed this experience, ending with a sigh. Similarly, Toby described his caregiving responsibilities towards his older brother stating, ‘[. . .] sometimes like, at get-togethers, ah, like I stay with him ‘cause he needs to be kind of watched a bit?’. Emily expressed her brother’s reliance on the family and others. Spontaneously incorporating toys and items to describe her experiences with her brother, Emily pretended to be him saying, ‘And that’s how I’m thinking like [my brother]. So, ‘What do I have to do! What do I have to do! I have to wait for people’. From Emily’s perspective, her brother was dependent on and must wait for others, including his younger sister, for assistance.

Protector

In addition to taking on a caregiving role, interestingly, one participant assumed an openly protective role. Braden expressed a duty to keep his sibling on the autism spectrum safe. He claimed, ‘And honestly, my brother and I, we’re at each other a lot but, if someone were to try and hurt him, and, I would try to hurt them’. Braden was clear about ensuring his sibling’s safety. He was prepared to use physical force if someone tried to harm his brother. Braden’s statement suggested a level of self-confidence in his willingness to physically stand up to another person who might be physically aggressive towards his autistic brother.

Group Experiential Theme 2: connection and disconnection

Participants discussed the impact of their siblings’ autism diagnoses on their relationships. They described examples of when they got along well and formed meaningful connections with their autistic siblings and instances when they found it difficult to connect.

Spending time together

Siblings described different ways in which they connected with their autistic siblings. When asked how they get along, Matthew said, ‘We get along pretty good’. While this sibling pair preferred vastly different downtime activities, the dyad would hang out: ‘I like that when I tell him to come and lie with me, he doesn’t just run away?’. Simply being physically together without a planned activity fostered a connection between Matthew and his brother. In comparison, Pauline described a shared activity with her sister: ‘And sometimes, since I like drawing, I sometimes make, draw a picture for her to colour’. She went on to say, ‘. . . But we don’t really do it often’. emphasizing that while this activity was one that they did together, it was relatively infrequent.

Sibling bond

Non-autistic siblings described their relationships positively. For example, when Emily was asked if there was anything that she did not like about her brother, she stated:

No. There’s hardly anything. There’s one time though that I did say something, like I hate him. Because he ruined something that was at the fair, it was a balloon. But I shouldn’t have, it was a cheap thing. [. . .] I couldn’t get another one. So I was screaming’[Brother], why would you do that?’ Then he started smiling like, ‘Oh it was a joke’. So then I yelled and it wasn’t good. I shouldn’t have done that. But I love him dearly and he got up and like wanted to run away. Like run home. He was so sad. He wouldn’t go anywhere near me when I tried to say sorry. He was hitting me, he was pushing me. So I would say sorry and I loved him dearly? It took like a week for him to recover to me. And I was heartbroken.

Emily’s description shed light onto a situation when her and her brother were disconnected, then reconnected after a period of time. After realizing her initial reaction, Emily expressed her guilt about what she said to her brother at the fair. Her description of the dyad’s conflict followed by a relationship repair indicated the bond between them. For Nadine, when describing her relationship with her brother, she said: ‘Like, I like how he’s very forgiving. And um, so if I do get mad at him and, like, yell at him or something, he’ll just forgive me maybe 5, 10 minutes later, once we’re both settled down, so. Yeah’. In these examples, when sibling conflict occurred, it was resolved, and connections were maintained.

Working through disconnection

Participants also described instances when it was difficult for them to connect with their siblings. Selena stated, ‘I hug him from behind and he doesn’t, and then he just tries to get me off but I won’t let go’. In this example, Selena described her attempt and struggle to physically connect with her brother. He physically tried to get out of the embrace, but Selena ‘won’t let go’. Selena held on to this bid for connection with and physical closeness to her brother. Other siblings commented on different interests they had from their siblings, which made it hard to connect. Max, who was younger than his autistic sibling, displayed a maturity towards his thinking about his older brother regarding their dramatically different personal interests (e.g. building model airplanes vs watching shows geared towards young children): ‘I don’t know. . .Just. . .I guess I have to think about it differently because like he has autism and like it’s just like, what makes him happy, and just.’. . . Max’s own hesitation towards accepting the differences between them implied that it was difficult for him. He was attempting to work through his thoughts about his autistic brother. Max was trying to foster a positive and optimistic outlook, even though there was some uncertainty (e.g. ‘I don’t know.’.., ‘I guess.’..) in his narrative. Interestingly, Nadine initially said, ‘. . . Uh, yeah we do a lot [together], actually’, then described picking her brother up from school and walking home together. Nadine followed up by stating, ‘There’s not too much we do, like as an activity. Maybe um, hmm. I can’t think of anything’. Nadine had difficulties identifying joint activities that connected her to her brother. Her immediate, initial reaction was that, yes, they had shared activities, to ultimately realize that they had relatively few engagement opportunities.

To foster sibling engagement, Toby offered the following recommendation:

Um, if he’s being annoying stay calm and try and get nice to him, not get mad at them? And uh, try to keep calm ‘cause they’re different than you? And they will probably stay that way for most of their lives? And uh, eventually they’ll get better.

Aggressive, self-injurious, and rigid behaviours

Participants expressed difficulty connecting with their brother or sister when they engaged in aggressive or self-injurious behaviours, such as hitting, screaming, crying, and pinching. Max stated, ‘. . .sometimes, sometimes he hits me…’ when asked if there was anything about his brother that bothered him. The significance of this statement was that what bothered Max: aggression towards him. This negatively affected their ability to meaningfully connect. Braden described his experience and reflections about his younger brother’s aggression:

My brother and I. . .considering we are brothers, you know, I try my best to keep calm and I keep having to say to myself, he doesn’t mean everything that he does? Sometimes when he hits you or screams at you, you want to do the same thing back to him, but at the same time, you can’t do it as hard or not even at all. Because it doesn’t help anything.

Braden highlighted how he made sense of the aggression and how he talked himself out of retaliating. He recognized that if he were to take a reactive approach and hit back (or hit hard), it would not improve the circumstance (i.e. ‘. . .it doesn’t help anything’).

Further, when siblings on the spectrum engaged in rigid behaviours, it was difficult for participants to relate to their brother or sister. For example, Selena stated, ‘Um [pause]. He wants to like, be in control of everything. And he doesn’t want to lose control, he just wants what he wants’. Throughout Selena’s narrative, she described an example of how her brother’s rigid behaviours impacted their sibling connection: ‘Well I barely get to watch my own show because he’s all over it. . . He controls the TV’.

Communication difficulties

Communication challenges also made it hard for siblings to connect. For example, Nadine stated:

[. . .] Ummmm, hm. Well it is when he does get upset, like it’s hard because he doesn’t understand. But he, again, he understands so much, like, at the same time so. Like he understands, kind of, what you say like, say, ‘[Brother], turn off the light switch’, he’ll like understand what you mean. But then if you say, ‘Oh [Brother], the VCR is broken, we can’t fix it’, he doesn’t understand that you can’t fix it. He, he thinks that everything, can be fixed, you know?

Nadine’s description of her brother’s lack of understanding reflected an instance when being on the spectrum made it difficult for them to relate to one another. Her frustration with their communication difficulties was evident in her statement ‘. . .it’s like hard.’. . .

How things might be different

Participants reflected on how their relationships with their siblings might be different if they were not autistic. For example, Pauline stated: ‘Um. I think she’d care for me, she’d cheer me up. Um. . . She’ll um, she’ll probably not spend as much time up in her room. Uh’.. Pauline’s statement suggested she was missing a reciprocal connection with her sibling. She was looking for emotional support ( ‘she’d cheer me up’) and physical closeness by not being in her room as much, but perhaps more physically present with Pauline. Participants also mentioned that if their brother or sister was not autistic, they would not experience communication difficulties. Max stated, ‘Well, obviously I’d like it if he didn’t have autism. . .Well I can’t really like, I can’t really like talk to him, like, have conversations, stuff like that’. Max expressed extreme difficulties relating to his autistic brother. Implied in this narrative was the desire for conversation and connection with his older brother. Similarly, Toby said, ‘Uh, I wish my brother could talk more? Because he really, like, tries, struggling to tell us what he wants sometimes? So. Wish he could talk so he could just tell’. Matthew stated, ‘I wish I could, I wish I could take, make sure that he didn’t have autism. ‘Cause then he could like tell us if he’s sad, he could tell us what’s wrong’. He was frustrated with not being able to understand his brother’s emotional experiences and needs.

Another sibling stated:

Um. It’d also be different because, he’d probably, be less frustrated with himself? Because sometimes he gets into a bad mood when he’s frustrated with himself because he can’t tell you what he wants? So, if he could talk, he’d probably be able to um, express himself more? And he’d be much happier person (Nadine).

Participants expected that it would be much easier for their siblings and the family if their brother or sister could communicate more easily.

Other participants expected to do more things together if the sibling was not on the autism spectrum. For example, Toby talked about going out to more places together, ‘Like, a park, that you play on, or something?’. Braden stated, ‘Like we would go bike riding, we would go fishing, you know’.

Interestingly, some siblings enjoyed having separate interests from their autistic sibling, stating that if their sibling was not on the spectrum, the relationship would not be as positive. Sebastian said, ‘Um, we’d probably be fighting a lot more? And probably be in a lot worse temper because I’d probably not be able to do everything I want all the time’. Similarly, Emily stated:

I don’t think we’d have as good relationship. [. . .] So, if he didn’t have autism, it would be like a total different thing. He’d be like in a different family probably, or I wouldn’t be his sister, we wouldn’t even have a good relationship. We’d be fighting, we’d be yelling, we’d be kicking, screaming. We would not even be able to be near each other. And I would not like that, so. . ..

Emily’s narrative underscored the bond between her and her brother and the easygoing nature of their relationship. She articulated the closeness of their relationship and imagined that they would have a disconnected relationship if her brother was not on the spectrum.

Group Experiential Theme 3: our family is (extra)ordinary

Siblings described how their lives differed from families without an autistic family member and how they adapted. Participants recognized that their families were unique; however, they did not consider them unusual. Sebastian no longer ‘noticed’ his brother’s autism, stating:

Umm, I don’t know. I’ve been with him my whole life, and so I don’t really notice it anymore. I just kinda, it’s just kinda how life is, so. . . Like it’s just how things have always been. I’m so adjusted to it, I don’t really notice, I guess. . . How things are like different.

Other participants also described their family relationships in ordinary ways. When Matthew was asked what it was like to have a brother on the spectrum, he said ‘It’s normal’. Emily found it difficult to consider how life might be if her sibling was not on the autism spectrum. She stated, ‘[. . .] And I don’t think that’d be possible because like I just can’t picture that. Like if he had no autism, I wouldn’t be made. ‘Cause my parents feel that he was given to us for a special reason’. Emily could not even fathom the thought of her autistic brother not being on the spectrum. He was who he was; separating him from being autistic was unthinkable for her. They would not be their family.

Participants described playful ordinary sibling interactions. Selena stated, ‘I’ll wait until his show is done and then I watch something. Or if it’s just starting, I change it on him [chuckling]’. A playful teasing and fun aspect were described in Selena’s lighthearted encounter with her brother. As another example, Matthew described the following to the first author:

Matthew:

In the morning he likes to come into my bed and tackle me?. . . I usually wake up and he’s like lying on top of me! If he is [my alarm clock], then I have two, because I also use my iPod for my alarm clock.

Interviewer:

So is it like you have a snooze button with your iPod, then you get the other wake up?

Matthew:

No, [my brother] comes before [chuckles]

Matthew described how his brother tackled him in a fun-loving way twice during the interview. Revisiting their ordinarily playful tackling interactions highlighted the common activity that bonded the dyad.

Nadine recognized the uniqueness of her family as follows: ‘I guess, it’s just different than most, like, people, like have it. But. Hm. Yea I don’t know how else to describe it’. She went on to state: ‘But then after you’ve been living with a person who has autism for so long, it’s just. I don’t know, it’s just, kind of like part of you’. This participant described her experience as different from others, yet, for her, ordinary. Nadine returned to relating her family experiences to her perceptions of other families: ‘It’s very chaotic at points, but it’s not really, um. It’s just it, most people would find that they are under a lot of stress? But um, if they come to our family, it’s way more stressful’. In this narrative, Nadine recognized how her family might be considered different relative to how other families operate and also emphasized the increased stresses associated with being a member of her family. This notion of ordinary increased stress may be interpreted from Sebastian’s comment about his family life, stating, as a family ‘. . .we just deal with it’, implying that the family members accept the additional difficulties that present themselves and work through them together. Braden, among other participants, described how having a sibling on the spectrum provided the family with a unique perspective on life and how it made them stronger as a family unit:

. . .when you look at my family it is a very stable family, we’re a very strong family, nothing is going to separate us. You know, if autism doesn’t, then what will. But um, if he didn’t have autism, then there’d be a lot more things I think we’d take for granted?

Discussion

The goal of this study was to explore the lived experiences of siblings of children and youth on the autism spectrum. Our results revealed that while participants experienced challenges (e.g. additional responsibilities, difficulties communicating and connecting with their siblings), they generally embraced their siblings and adapted as a family.

Parentification

Participants described caregiver and protective roles towards their autistic siblings, which support existing literature on parentification: when non-autistic siblings take on complex caregiving routines typically associated with the parent-child relationship (e.g. Hooper et al., 2011). These responsibilities may include meeting a variety of their sibling’s emotional (e.g. acting as a confidante) and instrumental (e.g. doing the laundry) needs (Byng-Hall, 2008). Participants in the present study reported providing greater family assistance relative to their siblings (e.g. helping with groceries). Interestingly, across the four sibling participants who described taking on a caregiver or protector role, two of them were younger than their autistic siblings. Existing literature suggests that parents’ formal and informal sibling role expectations are communicated to children similarly for families with and without a child with a disability (Stoneman, 2001). Participants in our study implicitly described tensions as they fulfilled caregiver and protective roles and referred to the heightened expectations compared to their siblings on the spectrum. However, persistent protectiveness towards their siblings may be associated with neither positive nor negative experiences (e.g. Macedo Costa & Pereira, 2019). While studies on parentification have been linked to distress among non-autistic adult siblings who do not perceive to have high social support (Tomeny et al., 2017), most of the present study’s youth participants did not openly express strong feelings of distress. It is possible that distress may change over the lifespan. Regardless, it would be essential to attend to sibling anxiety or hardship indices concerning their involvement in caregiver-oriented tasks across earlier developmental periods.

Connection between siblings

All participants in the present study expressed difficulties communicating and creating connections with their autistic siblings, at least to some degree. Sibling interactions may be complex, given that core features of an autism diagnosis include difficulties with social communication (American Psychiatric Association, 2013). These social challenges (e.g. perspective taking, understanding non-verbal social nuances) may sometimes pose difficulties for siblings to connect with their brother or sister. In our study, shared activities that foster sibling connections were relatively infrequent and difficult to come to terms with, according to participants through their narratives. Frustrations regarding connecting and desires for improvements in their ability to communicate and understand one another were evident for participants in our sample. These sentiments about sibling connections (e.g. longing for connection, communication challenges) have been reported in previous research (e.g. Leedham et al., 2020). As challenging as it was for many participants in our study sample to connect with their brother or sister, non-autistic siblings valued the relationship. Positive connections between siblings were described in the present study, which is consistent with previous literature (e.g. Leedham et al., 2020; Schmeer et al., 2021). Participants who expressed positive bonds held their autistic siblings in high regard and underscored the uniqueness of the relationship.

Perspectives on the family

Participants referred to family tensions as well as triumphs. Siblings described accommodating and adapting to the needs of their autistic siblings, which is consistent with previous research (Gorjy et al., 2017). Unique to the present study was the exploration of siblings’ experiences of the family as a unit, in addition to exploring their specific experiences of the sibling dyad. Our participants generally noted that while there were some adjustments in the family life, they accepted their sibling on the spectrum and could not imagine their family without their brother or sister the way they were. Participants’ acknowledgement and acceptance of the family experience, as it was in the present study, is consistent with other research (e.g. Angell et al., 2012; Gorjy et al., 2017).

Limitations

Our study is not without its limitations. All participants were members of two-child families, which was part of our inclusion criteria and aim for sampling homogeneity. Findings from this study reflect this family constellation, which may be similar or different from families with more than two children. Additional research is warranted on siblings’ experiences from families of one or more autistic children or additional non-autistic children. Also, systematic data collected on other relevant family (e.g. parent gender, marital status, family structure, socioeconomic status, ethnicity) and individual (e.g. age of autism diagnosis, presence of a co-occurring intellectual disability, modes of communication) characteristics would have been beneficial. These additional data may have enhanced the interpretability and transferability of the findings. Furthermore, participants’ ages spanned across developmental periods (i.e. older adolescents and younger children), and siblings’ ages did as well (e.g. childhood and adolescence). Siblings’ lived experiences and meaning-making may change across developmental periods.

Future research

Additional research is needed to explore the family experiences of non-autistic siblings fully. Understanding what it is like to be a sibling of a child or youth on the spectrum, including the highlights and challenges of this experience would be helpful to inform possible supports to optimize thriving sibling relationships. Exploring how culture may influence perceptions of these relationships would be an exciting area for future study. Research using mixed methods approaches by combining quantitative and qualitative data to explore the sibling experience merits further investigation. Future mixed methods studies focused on the sibling experience could shed light on examining the integration between quantitative variables (e.g. culture, socioeconomic status) with qualitative explorations of the sibling experience. Mixed methods researchers might accomplish this goal in a variety of different ways. One example might be to conduct a sequential mixed methods study with a large-scale quantitative study to examine family constellation and individual-level variables followed by an in-depth examination of a subset of siblings’ experiences. This research endeavour would be a laudable contribution to the literature. Further, while we did not involve non-autistic siblings or other family members to participate in study development, future research with siblings of autistic youth should consider utilizing community-engaged research approaches or participatory action research methodologies to meaningfully involve siblings and other family members throughout the research process (e.g. co-developing the research question, co-developing the interview protocols, involving siblings as interviewers, developing and executing knowledge dissemination plans and activities) to inform future research and supports for non-autistic siblings. Along the lines of participatory research and community engagement, future research studies including or focusing on the voices of autistic siblings would be a critical addition to the sibling literature. Engaging autistic siblings using methods such as interviews and incorporating creative arts-based approaches to bring attention to often unheard voices is an essential contribution to the evolution of our understanding of sibling experiences and beyond. Finally, using findings from this study to inform the development of programmes for siblings not on the spectrum would improve our understanding of what non-autistic siblings might need (and might not need) to enhance their family experience.

Implications for practice

Overall, our findings have important implications on future practice. Participants in the present study expressed some challenges concerning their increased responsibilities within the family and some difficulties connecting to their siblings. These findings are consistent with existing literature (Watson et al., 2021). Our study findings suggest that social support is an essential way for non-autistic siblings to navigate their unique family experiences. Furthermore, understanding the unique needs of siblings of autistic children and youth may be used to develop (or re-structure) interventions or support programmes for non-autistic siblings. A unique forum (online or in person) may provide siblings with an opportunity to express their perspectives, desires, frustrations, and worries regarding their family experiences. Peer-to-peer formal or informal social support may provide non-autistic siblings with opportunities to connect with others who have similar experiences. Results from this study may also be used to inform caregivers about non-autistic siblings’ lived experiences and highlighting their unique needs through workshops focused on promoting the well-being of all individual family members and what it means to thrive as a family.

Conclusion

We explored the lived experiences of non-autistic siblings of children and youth on the autism spectrum. Overall, participants referred to various positive and negative experiences of what it is like for them to have an autistic brother or sister. Our results highlight the importance of exploring siblings’ perspectives towards their siblings. Unique to the present study was non-autistic siblings’ insight into their overall family experiences, in addition to their perspectives of the sibling dyad. These findings may help guide future research on the sibling experience and develop programmes to support the needs and goals of non-autistic siblings and their families.

Footnotes

Declaration of conflicting interests

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

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by an Autism Ontario Stimulus Grant.

ORCID iD

Priscilla Burnham Riosa

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