Exploring the effects of having an autistic sibling on typically developing young people
Intended for healthcare professionals
Evidence and practice    

Exploring the effects of having an autistic sibling on typically developing young people

Mia Randle Staff nurse, University Hospitals of Leicester NHS Trust, Leicester, England
David Christopher Dalby Senior lecturer, De Montfort Nursing and Midwifery, De Montfort University, Leicester, England

Why you should read this article:
  • To recognise the importance of understanding the experiences of typically developing young people who grow up with an autistic sibling

  • To enhance your knowledge of the positive and negative effects that living with an autistic sibling can have on typically developing young people

  • To identify interventions that could support families and typically developing siblings

Evidence suggests that growing up with an autistic sibling can have positive and negative effects on typically developing young people. However, ‘tension’ is not commonly explored in the literature. In this context, tension is regarded as feelings of worry, anxiety and conflict – for example, typically developing young people might feel protective of their autistic sibling but at the same time feel jealous of the amount of time their parents spend with them. This article details a qualitative synthesis analysis of the literature that investigated the effects of having an autistic sibling on typically developing young people. Two main themes were identified: childhood experiences and acceptance; and difficulties and social issues. The article discusses how these themes affect typically developing siblings positively or negatively and may cause tension. The authors also make some recommendations for future research and practice.

Learning Disability Practice. doi: 10.7748/ldp.2021.e2157

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Correspondence

ddalby@dmu.ac.uk

Conflict of interest

None declared

Randle M, Dalby D (2021) Exploring the effects of having an autistic sibling on typically developing young people. Learning Disability Practice. doi: 10.7748/ldp.2021.e2157

Published online: 15 July 2021

Living with an autistic person can increase families’ risk of psychological issues such as depression, stress and fatigue (Nealy et al 2012, Herrema et al 2017). After parents, siblings interact the most with autistic people, and there has been growing interest in researching the effects of growing up with an autistic sibling on typically developing young people (Angell et al 2012, Thomas et al 2015).

Research has identified the significance of sibling bonds in psychological development. For example, Howe and Recchia (2014) wrote that sibling relationships are a safe and secure place in which children can learn how to interact with others, manage disagreements and regulate emotions in socially acceptable ways, and suggested that challenging early relationships may be associated with suboptimal developmental outcomes. Therefore, it is possible that having a brother or sister with differences in communication and interactions may affect typically developing siblings. Dempsey et al (2012) suggested that understanding the psychological functioning of siblings is essential for developing and implementing interventions involving or led by the siblings of autistic children that aim to support the autistic brother or sister by enhancing their social skills.

This article details a qualitative synthesis analysis of the literature that was undertaken. A qualitative synthesis analysis systematically searches for research on a topic and draws together the findings from individual studies to expand understanding.

Key points

  • Typically developing young people who live with an autistic sibling may experience feelings of tension and conflict

  • Sibling support groups and support targeted at individual typically developing siblings may improve their well-being and assist them to cope with living with an autistic brother or sister and interact with them effectively

  • Support should provide typically developing siblings with information about autism and practical skills that will enable them to engage in developmentally appropriate play

  • Support for parents could assist them to reinforce positive sibling interactions and consider future planning, and family-centred interventions should include typically developing siblings

Aim

To examine the effects of having an autistic sibling on typically developing young people.

Method

The PEO (population, exposure, outcome) framework was used to generate the research question, as follows:

  • Population – typically developing young people.

  • Exposure – autistic sibling.

  • Outcome – effect.

The research question was ‘what is the effect of having an autistic sibling on typically developing young people?’.

The Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline and PsycINFO databases were selected for the literature search. While PsycINFO mainly focuses on psychology, it also contains nursing and child development records, which enhances its suitability for this topic (National Autistic Society 2016, Dolan 2018, Aveyard and Sharp 2018). Since the findings were to be analysed and critiqued, articles were limited to full text and the ‘peer reviewed’ filter was applied to ensure high-quality search results (Dawidowicz 2010). Dates were limited to articles published between 2009 and 2019 (LoBiondo-Wood and Haber 2018).

Table 1 details the search strategy. The search initially yielded 80 articles, of which 41 remained following the removal of duplicates. Eleven articles remained after screening titles and abstracts using the inclusion and exclusion criteria (Box 1).

Table 1.

Search strategy

ldp.2021.e2157_0001_tb1.jpg
Box 1.

Inclusion and exclusion criteria

Inclusion criteria:

  • Primary qualitative research

  • Studies based in Western countries with a similar culture, education and economy to the UK

  • Studies where there was no suspicion of autism in the typically developing sibling

Exclusion criteria:

  • Studies on the experiences of non-typically developing siblings

  • Studies on health-related issues

The Information Source Evaluation Matrix (ISEM) (Leigh et al 2009) was used to evaluate and rate the remaining 11 articles. The authors selected the four articles that scored the highest on the ISEM, three of which were based in the UK. Data were extracted based on each study’s strengths and weaknesses using Holland and Rees’ (2010) critiquing framework, relevance to the research question and recommendations for future research and practice.

Table 2 provides a summary of the articles included in this review.

Table 2.

Summary of articles included in this review

AuthorsAim and methodCountry and sampleSummary of findings
Corsano et al (2017)
  • To explore the experiences of growing up with an autistic sibling and identify differences in their relationships with and attitudes towards them

  • Qualitative content analysis of semi-structured interviews

  • Italy

  • 14 typically developing young people aged between 12 years and 20 years with an adolescent autistic brother (age range not given)

  • Typically developing siblings expressed mixed feelings about their brother, a precocious sense of responsibility, concerns about the future, friendship issues and the desire to talk about their experiences

Petalas et al (2009)
  • To explore the perceptions and experiences of typically developing young people with an autistic brother

  • Semi-structured interviews, which were analysed using interpretive phenomenological analysis

  • UK

  • 8 typically developing young people aged between 9 years and 12 years with an autistic brother aged between 8 years and 17 years

  • Analysis yielded five main themes:

  • Siblings’ perceptions of the effect of their brother’s condition on their lives

  • Siblings’ perceptions of the attitudes of others

  • Siblings’ tolerance and acceptance of their brother

  • Positive attitudes and experiences

  • Siblings’ views on support for themselves and their brother

Petalas et al (2012)
  • To identify the perceptions and experiences of typically developing young people with an autistic brother, including how they make sense of their unique circumstances

  • Semi-structured interviews

  • UK

  • 12 typically developing young people aged between 14 years and 17 years with an autistic brother aged between 4 years and 18 years

  • Analysis of the typically developing young people’s perceptions yielded six themes:

  • Difficulties and negative impact of their brother’s condition on themselves and their family

  • How others’ reactions to their brother negatively affected them as siblings

  • How their history with their brother contextualised their present circumstances

  • The varying degrees of acceptance and tolerance towards their brother

  • Positive perceptions and experiences with their brother

  • Their thoughts and worries about the future

Ward et al (2016)
  • To explore typically developing young people’s perceptions and experiences of living with an autistic sibling

  • Qualitative descriptive study using audio-recorded semi-structured interviews

  • UK

  • 22 typically developing young people aged between 7 years and 18 years with an autistic brother or sister aged between 4 years and 23 years

  • Typically developing siblings recognised various challenges and positive aspects of living with an autistic young person. Challenges included decreased parental attention, additional responsibilities, problematic behaviours and communication issues. Positive aspects included developing empathy, love and appreciation for their autistic sibling, as well as realising their experiences were life-changing

Findings

Analysis of the four studies using Holland and Rees’ (2010) critiquing framework identified two recurrent themes:

  • Childhood experiences and acceptance.

  • Difficulties and social issues.

Childhood experiences and acceptance

Childhood experiences increased typically developing young people’s appreciation of their autistic siblings’ positive qualities, and they frequently described them as nice, polite and funny (Petalas et al 2009, 2012, Ward et al 2016, Corsano et al 2017). Many of these young people felt pride when other people such as their peers, friends or family enjoyed engaging in activities with their brother or sister. However, they also regretted the lack of time they spent with their autistic siblings because of their uncertainty about how to interact with them and their particular interests, resulting in tension (Petalas et al 2009). In this context, tension can be regarded as conflicting feelings, illustrated in this case by pride and uncertainty. Typically developing young people also praised what they described as their siblings’ ‘remarkable traits’, such as their ‘exceptional memory’, and felt proud of their achievements, for example socialising with peers which, in the context of autism, they regarded as exceptional. This enhanced their appreciation of their sibling (Petalas et al 2009, 2012).

Petalas et al (2012) reported that autistic siblings’ characteristics, such as needing strict routines, can have positive effects on typically developing young people and that seeing their siblings’ passion for their particular interests taught them happiness and appreciation. However, Corsano et al (2017) found that this came at a personal cost for these young people, including lack of privacy and difficulty forming and maintaining relationships. Again, this illustrates the tension that results from conflict between positive feelings towards autistic siblings and the perceived negative effects of having an autistic brother or sister. Supporting typically developing young people to engage in developmentally appropriate therapeutic play and interact with their autistic sibling appropriately, as well as encouraging them to discover mutual interests, may increase the quality time they spend together.

Living with an autistic sibling can result in learning for typically developing young people, for example some of them said they had greater knowledge about autism (Petalas et al 2009, Ward et al 2016) and learned practical skills such as washing, dressing and feeding their sibling (Petalas et al 2009). However, younger participants (those aged nine years to 12 years) often could not envisage how these would apply in the future or to experiences outside the home, and they were typically unable to use skills such as de-escalation in challenging situations, for example at school (Petalas et al 2009, 2012). This resulted in tension because they viewed these atypical roles as a hindrance that interfered with their daily lives (Petalas et al 2009, 2012). Young people who assisted in caring for their autistic sibling had additional responsibilities that disrupted their daily lives, despite their desire to protect and care for their sibling (Petalas et al 2009, 2012, Ward et al 2016, Corsano et al 2017). Support groups assisted typically developing young people to cope with these responsibilities by providing them with practical skills such as personal care, as well as enhancing their knowledge about autism (Petalas et al 2009).

When discussing these issues in interviews, younger participants tended to focus on the present, while older participants typically focused on the past and evaluated whether the time they had spent with their autistic sibling could have been more productive in terms of developing skills such as personal care or de-escalation (Petalas et al 2012, Ward et al 2016). Corsano et al (2017) found that, although typically developing young people were ‘psychologically stronger’ and had more patience, acceptance and emotional stability than their peers as a result of caring for their autistic siblings, their brother or sister’s different social skills and limited ability to care for themselves resulted in conflicting feelings of concern and annoyance. Participants in Petalas et al’s (2009, 2012) studies reported that, although they gained knowledge and practical skills, they believed further insight into autism would benefit their relationship with their sibling. This is another example of tension, in this case between what young people regard as their ‘atypical’ roles and/or their siblings’ limited abilities and gaining knowledge and/or practical skills (Petalas et al 2012).

While typically developing young people appear to become more practised in and less affected by their atypical roles as they become older, they may require support to relate the skills they have learned to future caregiving roles, for example caring for their own children or older family members or assisting their peers at school. In this way, their competence in undertaking such roles and coping with stressful situations could increase as a result of their experiences. These young people could also be provided with resources to increase their knowledge about autism.

Participants in the articles reviewed accepted their autistic sibling to varying degrees (Petalas et al 2009, 2012, Ward et al 2016, Corsano et al 2017). For example, many participants acknowledged and accepted their sibling’s communication and behavioural differences, viewing them as ‘special’, while others reported that although their sibling was ‘different’ it felt ordinary to them, so their situation was normalised (Petalas et al 2009, 2012, Ward et al 2016). Several typically developing young people said they learned patience and unconditional love from having an autistic sibling, which could assist them in the future in caregiving roles such as parenting (Ward et al 2016). They also learned to be accepting and non-judgemental, and felt comfortable being with people with disabilities (Petalas et al 2012, Ward et al 2016).

Corsano et al (2017) found that, although typically developing young people accepted their autistic siblings, some expressed mixed feelings because they found it challenging to recognise or were in denial of communication differences, interactions or behaviours. Despite this, their acceptance of their situation – alongside their development of positive psychological attributes such as empathy and acceptance – demonstrated maturity and adaptability (Corsano et al 2017). Support and education from learning disability nurses to assist these young people in recognising and accepting autistic siblings’ differences may be required. This must be individualised, because typically developing young people’s perceptions may change as they become older and, as this review demonstrates, they do not all feel the same way.

Some typically developing young people recognised the importance of playing with their siblings and not maturing too quickly – that is, attempting to ‘remain a child’ despite taking on a more mature role. However, many of those who were older worried about their future role and described conflicting feelings between wanting to ensure their sibling’s future care was planned as well as in their best interests and wanting to lead an independent life (Petalas et al 2012, Corsano et al 2017). Their empathy for their autistic siblings demonstrated emotional maturity, but those who were older and felt responsible for reducing their siblings’ challenging behaviour often fluctuated between this and irritation, resulting in emotional conflict (Petalas et al 2012, Corsano et al 2017).

Although participants in the articles reviewed appeared to be more mature than their peers, for example due to their long-term involvement in their autistic siblings’ care, the disruption to their lives and their conflicting feelings between empathy and irritation illustrates the tension they can experience. Support programmes may assist families to develop plans for future care and support, while acknowledging typically developing young people’s potential future roles could enable them to cope with their responsibilities.

Difficulties and social issues

Behaviour that challenges is often difficult for young people to cope with. All the participants in Petalas et al’s (2009) study talked about their autistic siblings’ behaviour that challenges, while Ward et al (2016) reported that such behaviour was more typical in those who were male and younger. Behaviour that challenges often caused typically developing young people stress, sacrifices in terms of undertaking relationships and activities with their peers, and disruption to their daily lives (Petalas et al 2009, 2012, Corsano et al 2017). Furthermore, many of them were confused by their siblings’ behaviour, while aggressive behaviours generated feelings of failure and disappointment (Petalas et al 2012). Those who were older provided positive descriptions of their siblings’ ‘idiosyncratic behaviour’, such as strict routines and taking things literally, which may be because their patience had increased (Petalas et al 2012). It was also identified that typically developing young people frequently felt emotionally conflicted because, although their sibling’s behaviour that challenges had negative effects, they understood that their sibling ‘lacked control’ and forgave them (Petalas et al 2009, 2012, Ward et al 2016).

The articles reviewed focused on autistic brothers or did not identify gender, so the effects of behaviour that challenges in girls cannot be determined. Functional analysis, which examines the causes and consequences of behaviours, may identify triggers that would enable the implementation of positive behavioural support. This would centre on the needs of the autistic sibling but would assist parents and typically developing young people in recognising and avoiding triggers for behaviour that challenges and to put in place de-escalation strategies. Education and emotional support may benefit these young people by reducing their negative feelings and providing them with tools to manage their siblings’ behaviour that challenges.

Typically developing young people experienced regularly ignorance of autism among people outside of their family, frequently explaining the condition and their sibling’s behaviour. While some people outside of their family appreciated the autistic siblings, many lacked understanding and displayed negativity and prejudice (Petalas et al 2009, 2012). Corsano et al (2017) found that typically developing young people worried about being ridiculed because of their autistic siblings. In Petalas et al’s (2012) study, some older participants recalled feeling less anxiety about others’ opinions when they were younger, but now feared rejection by their peers. They experienced conflict between avoiding peer rejection and remaining loyal to their sibling. This can arise during adolescence because at this stage peer opinions may take precedence over family loyalty (Petalas et al 2012).

While some typically developing young people valued sharing their experiences with other people because it enhanced their knowledge and relationships or provided emotional support, negative attitudes towards autism caused them anger and embarrassment, which sometimes prevented them from talking about their sibling (Petalas et al 2009, 2012, Corsano et al 2017). They were usually more relaxed when talking to experts or people in similar situations, so support groups could provide non-judgemental, confidential environments in which they could share their experiences (Petalas et al 2009, 2012, Corsano et al 2017). Furthermore, improving knowledge about autism in schools and communities could reduce negative perceptions.

The articles reviewed suggest that having an autistic sibling can alter typically developing young people’s relationships. For example, younger participants often reported that they received less parental attention and felt unnoticed (Petalas et al 2009, Ward et al 2016). Older participants tended to believe that their situation reduced the time they spent with others inside and outside the family because their autistic siblings generally required more support (Petalas et al 2009, Corsano et al 2017). Some typically developing young people missed activities to avoid potentially prompting behaviour that challenges in their autistic sibling (Petalas et al 2009). Respite care enabled families to spend time with each other and undertake more activities together. However, participants in Petalas et al’s (2009) study reported that seeing the challenges their parents experience in attempting to obtain this type of support was stressful.

While Petalas et al’s (2009) study identified that participants felt a ‘special bond’ with their autistic siblings, those in other studies blamed autism for reducing their interaction and communication with their siblings (Petalas et al 2012, Corsano et al 2017). Participants often felt ‘torn’ between wishing to go back to when they were younger – since they believed that autism had reduced the time they spent with their siblings – and feeling that autism meant they spent more time with their sibling than typically developing teenage siblings usually would. One study found that parents usually supported typically developing siblings when they discussed this type of conflict, provided them with information about autism and comforted them when they were upset (Petalas et al 2009). However, Corsano et al (2017) found that parents tended to only discuss autism when questioned directly and added that having an understanding of autism could improve typically developing young people’s relationships with their autistic siblings.

Discussion

The findings of this review suggest that having an autistic sibling affects typically developing young people’s relationships with their families, friends and peers in terms of spending time with them and participating in activities. Supporting these young people to interrelate positively with their autistic siblings, for example through therapeutic play, may enhance their interactions and communication, while providing education to parents may increase their awareness of young people’s experiences of autism and support their efforts to interact. Respite care to ensure that families spend quality time together may also prove valuable.

This review offers an insight into the effects of having an autistic sibling on typically developing young people, which is an important but under-researched topic. Positive effects were identified to varying extents, which supports previous research that suggests growing up with an autistic sibling can result in feelings of pride, appreciation and maturity (Angell et al 2012), increased knowledge of autism, practical skills such dressing and feeding (Ferraioli and Harris 2009), and enhanced psychosocial and emotional development (Macks and Reeve 2007). The negative effects recognised in this review have also been identified in previous research, including stress and anger due to behaviour that challenges (Yacoub et al 2018), altered relationships with family, friends and peers, and reduced and altered social interactions (Benderix and Sivberg 2007, Green 2013).

Alongside the positive and negative effects of having autistic siblings, this review identified tension, mixed emotions and conflict, which could reflect the love that typically developing young people feel for – and the challenges of living with – their autistic sibling (Ward et al 2016). Previous studies found differing opinions on what these young people gain from or sacrifice for their autistic sibling, but have not focused on tension and mixed feelings (Yacoub et al 2018). Contradictory feelings about behaviour that challenges, other people’s perceptions and time spent with siblings have been identified in research on siblings of non-autistic children with disabilities (Opperman and Alant 2003), and this review suggests that these issues are also important for those with autistic siblings.

Limitations

Most participants in the articles reviewed came from two-parent, white families in rural areas, so the findings are not transferable to other populations. Despite the inclusion and exclusion criteria, variables such as family structure, birth order and family dynamics may have influenced the findings. Three of the articles focused on autistic brothers, so their findings cannot be applied to girls. The age range included was broad, and since each stage of child development has specific characteristics, caution is required when applying to the findings to typically developing young people as a whole (Paus 2011). None of the studies identified whether the autistic sibling also had learning disabilities.

The four studies used semi-structured interviews, which enable the collection of large amounts of in-depth data. However, even with piloting, these interviews could include leading questions, while interviewers’ expectations or opinions can interfere with objectivity and participants can react differently to interviewers (Gray and Grove 2020). However, the findings of this review are in line with previous research, which strengthens them.

The use of open-ended questions can make data challenging to analyse, and although coding ensured that the theories generated were grounded in the data, they may not be trustworthy because the identified themes depend on the accuracy of the original data. Corsano et al’s (2017) study used pre-identified themes, which may have influenced interviews, but in this case trustworthiness and confirmability were assured since the data were transcribed verbatim.

There was no independent peer checking in the studies, but their reflexivity is increased because they all involved team discussion and analysis, which resulted in contributions from different interpretive and professional perspectives.

Further research

Further research should involve increasingly representative samples and focus on single variables. Since age and gender affected study findings, research should be conducted to understand the influence of these factors on the effects of having an autistic sibling. Autistic siblings may have long-term and evolving needs, so longitudinal studies investigating the changing needs of typically developing young people should be conducted throughout their development. Combining different methods, such as observations and diaries, may offer increasingly detailed, robust accounts of typically developing young people’s experiences, and comparing parents’ perceptions of these young people’s experiences with their own accounts, as in Corsano et al’s (2017) study, would increase the validity of the findings.

Recommendations for practice

Based on the findings of this review, the authors make the following recommendations for practice:

  • Learning disability nurses are well placed to identify and attend to the needs of typically developing young people with autistic siblings.

  • Sibling support groups in therapeutic, non-judgemental, confidential environments could enable typically developing young people to discuss their experiences with professionals and others in similar situations.

  • Individual support, for example teaching typically developing young people how to engage in developmentally appropriate play or use positive behavioural interventions, may improve sibling interactions and communication.

  • Supporting parents to communicate openly and appropriately with typically developing young people to reinforce and maintain their efforts may assist them in interacting positively with their autistic sibling.

  • Programmes to support parents to acknowledge and plan future roles may assist typically developing young people to manage their concerns about this.

  • Family-centred interventions should include typically developing siblings.

  • Where appropriate, referrals to social and support workers should be made to assist families to obtain support such as respite care, to increase their quality time.

Conclusion

This review identified that having an autistic sibling can have positive and negative effects on typically developing young people, and the review identified themes of tension and conflict throughout the research, which demonstrates the need for increased support. Sibling support groups and support targeted at these individuals may improve their well-being and interactions with their autistic brother or sister. Support sessions could enhance their ability to cope with living with an autistic sibling by educating them about autism and providing them with practical skills that will assist them to engage in developmentally appropriate play. Support for parents could assist them in reinforcing positive sibling interactions, planning for the future and accessing other services as necessary. Family-centred interventions should also include typically developing siblings where possible.

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