Abstract
Purpose of the Review:
This scoping review was conducted to comprehensively examine global research on support groups for neurotypical siblings of individuals with autism spectrum disorder (ASD). The study aimed to understand the psychosocial needs of neurotypical siblings, the available support, and the effectiveness of support groups in informing the development of an optimal support framework.
Collection and Analysis of Data:
We adhered to the PRISMA extension for scoping reviews (PRISMA-ScR) to systematically map existing knowledge and identify gaps. The selection criteria included studies published in English from 2010 to 2024, including peer-reviewed articles, dissertations, and theses. A systematic literature search was conducted across PubMed, Google Scholar, MS Copilot, CINAHL, Ovid, and Web of Science, following a systematic framework, using defined keywords. Data extraction and peer reviews were conducted using spreadsheet-based methods to ensure methodological rigor. The spreadsheet included the study’s metadata (title, author, year, and journal name), population demographics (gender, age, and sibling order), methodology, and limitations.
Results:
Of 662 screened studies, 12 met the inclusion criteria after review of titles, abstracts, and full texts. Most studies focused on the impact (n = 4), sibling relationship (n = 3), and varied intervention types. Support groups were found to be a feasible and acceptable intervention for neurotypical siblings, offering improved understanding of their sibling’s condition, peer networks, safe self-expression spaces, better mental health, and coping skills.
Conclusion:
Findings support the development of tailored, evidence-based sibling support programs, recognizing these as a distinct domain in health and social care policy and funding.
Sibling relationships play a crucial role in a child’s development, particularly in their socioemotional development. This includes their ability to share, help, and resolve conflicts. Siblings often provide each other with companionship during their formative years. This companionship is instrumental in fostering empathy, kinship, and emotional intelligence among siblings. However, this can adversely impact the relationship when one of the children has autism spectrum disorder (ASD).1,2 ASD is a neurodevelopmental condition characterized by challenges in social interactions, restricted interests, and repetitive patterns of behavior or activities. These characteristics can significantly impact family dynamics and the experiences of neurotypical siblings. Siblings play a significant role in the lives of children with ASD through availability, stability, and age-appropriate social interaction. 3 Neurotypical (NT) siblings of a child with ASD are vulnerable to unfavorable emotional and behavioral outcomes. 3 They are susceptible to demonstrating mental health difficulties, including depression, anxiety, anger, and loneliness.1,4–6 These siblings are at an elevated risk for emotional distress and adjustment problems. 7 Many NT siblings develop enhanced responsibility and sensitivity toward their ASD siblings.8–10 But sometimes they may face impairment due to a lack of support, including internalizing and externalizing behavior problems. 11 ASD can impact communication and social interaction, making it harder for siblings to share, take turns, show affection, or engage in reciprocal conversations.
A support group is a system that helps NT siblings navigate these emotional upheavals by equipping them better to handle the unique challenges their social circumstances present. Sibling support is a sector with several variations and emerging practices, shaped by the policies in the regions where support providers operate. 12 Support groups are designed to provide the NT siblings a safe space to discuss their feelings, learn coping strategies, and develop a peer network. 13 They help NT siblings increase their knowledge of their siblings’ disorder, develop problem-solving and leadership skills, and find comfort from others in similar situations.14,15 These support groups aim to empower siblings within their family dynamics by developing more assertive and empathetic relationships. 16 These programs also aim to better understand the siblings’ perspectives on their identity and their perceptions of their family’s functioning.17,18
Research indicates that siblings participating in these programs demonstrate improvement in certain areas of mental health and the quality of their sibling relationships. They reported improved peer network and reciprocal interactions. 19 They also demonstrated improved self-concepts, communication skills, and knowledge of autism, which led to better coping strategies and sibling relationships.14,20 The strategies benefited sibling interactions and helped NT children recognize their siblings’ abilities and limitations.16,21 They helped strengthen sibling bonds, empower siblings, and inspire them to drive systemic change. 15 Studies underline the importance of recognizing sibling support as a distinct sector within medicine, health, and social care. 12 The review is conceptualized to study the functioning and effects of support groups on siblings of individuals with autism. This will involve a thorough review of the literature on the topic and a critical analysis of relevant design studies, which can guide the creation of support groups for psychosocial support for siblings of individuals with ASD.
Objectives
This scoping review aims to delineate global research on support groups for NT siblings of individuals with ASD. The review aims to understand the psychosocial needs of neurotypical siblings, the available support, and the effectiveness of support groups in informing the development of an optimal support framework. The review also examines the impact of support groups on fostering robust peer support networks and enhancing mental health outcomes, informing the development of an evidence-based support framework.
Methods
A scoping review was conducted using the framework proposed by Arksey and O’Malley 22 further refined by Levac, 23 and the Joanna Briggs Institute (JBI) guidelines for scoping reviews. 24 Arksey and O’Malley 22 have given stages of scoping: (a) Identifying the research question: It should be clear and broad. They give purpose to the review. (b) Identifying relevant studies: Sources, time frame, comprehensiveness, and breadth are important in the search. (c) Study selection: Selection should be based on inclusion and exclusion criteria related to the research question. (d) Charting the data: A form is developed, and a descriptive, analytical, or narrow review method is used for data charting. (e) Collating, summarizing, and reporting results: A thematic or analytic analysis is presented using tables or charts. (f) Consultation (optional): We can consult other stakeholders for unpublished data.
In this study, we used the first five stages of scoping review. We also adhered to the PRISMA extension for scoping reviews (PRISMA-ScR) to ensure a systematic mapping of existing knowledge and gaps, and the JBI guidelines for scoping reviews 24 are similar.
Search Strategy
A comprehensive search strategy was employed across multiple digital databases to identify existing studies on support groups for NT siblings. In December 2024, the databases PubMed, Google Scholar, MS Copilot, CINAHL, Ovid, and Web of Science were researched.
The comprehensive coverage of health, social care, and multidisciplinary literature relevant to autism and sibling support in these databases resulted in their selection. Web of Science and Ovid provided access to interdisciplinary studies, while PubMed and CINAHL were chosen for their extensive indexing of peer-reviewed medical and nursing research. Google Scholar was integrated to expand the range of academic and gray literature. The search was enhanced by identifying more relevant sources through MS Copilot, an AI-assisted tool accessible via institutional access. The results were verified against peer-reviewed databases to ensure correctness and adherence to scoping review requirements.
Authors of the present study searched each of the above databases using a combination of search terms. The search terms included “support groups,” “interventions,” “siblings,” and “autism” combined using Boolean operators (AND, OR). Search parameters were limited to English-language articles published from 2010 to 2024 to capture recent advancements in ASD support interventions and sibling-focused research, reflecting evolving understanding and practices in the field. Reference lists of included studies were also manually screened to identify additional relevant articles.
Study Selection
The search results screening was conducted in three steps involving: (a) title and abstract screening by individual authors of the present study; (b) peer review of the shortlisted abstracts; and (c) full-text review of the shortlisted studies. Discrepancies in study selection during peer review of shortlisted abstracts were addressed through author discussions, with a third reviewer involved when consensus could not be reached.
The studies were included if they focused on the functioning and effects of support groups of siblings of individuals with autism, were published in peer-reviewed journals, including dissertations/theses, and provided empirical data or comprehensive reviews.
The studies were excluded if they were not directly related to the focus areas of the research (e.g., siblings of individuals with a disability other than autism, no direct focus on the effectiveness of support groups, etc.), not written in English, scoping reviews or systematic scoping reviews, and published before 2010.
As part of the initial keyword-based search, 235 studies matched the search criteria in PubMed, 101 documents in Google Scholar, three in MS Copilot, 48 in CINAHL, 20 in Ovid, and 255 in Web of Science. Only studies written in English and published from 2010 to 2024 were selected at this step. The authors of the present study then further screened the manuscripts by reading their titles and abstracts and filtering them according to the above criteria. This exercise resulted in a shortlist of 44 studies. The shortlisted study details were logged in a spreadsheet. The abstracts were then peer-reviewed by the authors of the present study to further confirm their relevance. This resulted in 18 studies. Any studies that did not examine the effects of support groups on NT siblings were excluded, leaving a shortlist of 12 studies. Figure 1 illustrates the study selection approach below.
Flowchart of Study Selection.
Data Charting
The data from the shortlisted studies were extracted into a standard format in a spreadsheet. This facilitated an organized review of the data. The data extraction format in the spreadsheet included the following columns: Study’s metadata (including title, author, year, and publishing journal), population demographics (including gender, age, and sibling order), methodology, limitations, results, and conclusion. The authors individually analyzed the data and then came together to discuss the themes presented by the studies relevant to the research questions.
Results
The included studies (n = 12) focused on the definition and principles of sibling support (n = 1), sibling expectations from the support groups (n = 1), the impact of existing support groups on siblings (n = 4), improvements in mental health (n = 2) and quality of sibling relationships (n = 3) due to support groups, and the need for improved sibling support programs (n = 1). Studies indicate that sibling support groups have several positive effects on the psychosocial well-being of NT siblings, thereby addressing aspects of symptom management and, in some cases, symptom reduction; however, results vary across studies. The most significant outcome observed across these studies is that siblings found support groups to be a safe space for expressing themselves and sharing their experiences.12,14,16–18,25,26 Studies observed that the support group facilitated the development of peer networks among NT siblings through open communication within the group.14,17,19 The peer-led format, combined with humor and shared emotions, creates a safe environment for siblings to express their feelings. The principles of sibling support address individual needs (recognition, validation, social-emotional well-being, knowledge, and skills), relationships, connection and community building, advocacy, and research.12,19 The study by Burke et al. set the expectations for sibling support groups as sibling solidarity, empowered participants, and increased awareness of available resources. The studies suggested that sibling support groups may have positive effects (lifelong responsibility, dedication to family, self-esteem, and resilience). Still, they did not affect the quality of life and social support scale.16,17,25,26 Improved sibling relationships, adjustments, and their quality were also reported through adaptive coping strategies.2,19,25
The studies involved 272 NT siblings aged 4 to 67 years. The broad age spectrum is not a specific inclusion criterion for this review but rather reflects the reality that individuals with ASD have siblings throughout their lifespan, and support needs can arise at any age. Eighty-three NT siblings out of 272 were in the control group, while 10 were in a delayed group.
Participants also included 102 individuals with ASD whose NT siblings were participating in three studies. Seventeen service providers and 13 people in senior leadership roles from 12 organizations (n = 1) were also included. Of the NT sibling participants, 114 were male, 157 were female, and one identified as non-binary. Of the ASD participants, 81 were male, 18 were female, one was non-binary, one was of another gender, and one was not specified.
Demographics across studies had several gaps. One of the most significant gaps noted was that eight studies were based in the USA, three in Canada, and one in other Western, English-speaking countries such as the UK, Australia, and New Zealand, resulting in limited diversity across race, ethnicity, culture, and primary spoken language. Other gaps noted were that the study samples were small and limited to lower-, middle-, and upper-socioeconomic status. Moreover, the studies primarily focused on siblings under 20 years of age, highlighting the limited research on adult NT siblings. Table 1 presents the population, study type, intervention, comparison group, and outcome for each study included in this review.
Summary of the Selected Studies for the Scoping Review.
Intervention Mechanisms
Studies deployed varied intervention types across their participants. While most studies employed an intervention group, the most consistently valued mechanism across the studies is the opportunity for siblings to connect with peers. Participants value finding comfort in meeting people who understand their unique situation and in sharing their experiences. Educating siblings with knowledge about ASD is also seen as a key mechanism in driving better understanding and empathy among the NT siblings. Interventions that teach specific coping and problem-solving skills are frequently noted as beneficial. These interventions and training in behavioral skills and relaxation techniques help siblings manage their feelings toward one another, navigate challenging situations, and develop positive ways to address challenges. Creating a safe space for siblings to express and discuss their feelings is important. Activities such as group discussions and role-plays can help siblings process their emotions and learn from their peers and facilitators. Many studies lacked a randomized control design with a control group, so we cannot attribute the effects to the interventions.
Tools
Several tools were deployed across the studies to measure baselines, interim progress, and outcomes. The most common tools used across studies were pre-/post-questionnaires to assess different parameters such as quality of life, ASD knowledge, self-concept, ability to cope, and other mental health markers. While these are easy to administer, their reliability is often questioned due to limited self-awareness, desire for social acceptance, and potential biases that may influence the responses. However, the studies included in this review did not rely solely on these questionnaires. For instance, some studies used the Social Support Scale for Children (SSSC). This questionnaire is recommended as a more reliable tool due to its child-focused design, which captures contextual support from parents, teachers, classmates, and close friends. 26 Behavioral observation tools were also included in certain studies.2,19,25 The reliability of behavioral observation tools is often assessed through inter-observer agreement. Although they can be time-consuming and their sensitivity in detecting changes is mixed, their inclusion in some studies provides a direct assessment of interactions.
Furthermore, some studies employed a mixed-methods approach combining quantitative and qualitative methods to provide a more comprehensive view of intervention outcomes, thereby mitigating the limitations of any single measurement type.12,16
Outcomes
Studies analyzed the impact of support groups on NT siblings across multiple parameters. These parameters can be divided into the following themes:
Psychoeducation
Most studies focused on enhancing knowledge, along with other outcome measures. Awareness and knowledge acquisition can help them understand and address them in a positive light. The sibling groups offer educational and psychological support to siblings of children with ASD. 12
Networking
The support groups helped in peer networking, which boosted their self-confidence, well-being, sibling relationships, and self-concept.2,19
Mental Health Issues
The majority of studies reported positive outcomes on these parameters, suggesting that support groups provided significant psychosocial support and improved mental health. These studies reported a decrease in depression and anxiety. Self-expression space provides them with a way to solve their mental health issues. 13
Adaptive Coping Strategies
While participating in support groups, the siblings learned useful coping strategies and shared them with other group members.
Most studies focus on knowledge and education and do not account for the long-term effects of the interventions.
Discussion
The demographic diversity across these studies, while primarily focused on children and adolescents, underscores the critical recognition that the sibling experience persists across the lifespan. Studies of adult siblings indicate long-term caregiving, especially in cultures with high family cohesion. 2
Sibling relationships are often among the most enduring, as evidenced by the broad age range of siblings across studies, and among the most complicated human relationships. These relationships lay the foundation to establish a person’s socioemotional constitution and their ability to navigate various social circumstances throughout their lifetime. However, when one of the siblings has ASD, the sibling relationship can go through a lot of stressors. In particular, the NT siblings are susceptible to depression, anxiety, isolation, anger, and various other adverse internalizing or externalizing behavior outcomes.
Recognizing the challenges the NT siblings face, sibling support groups offer valuable intervention and support. Family systems theory suggests that sibling support groups serve as interventions that enhance NT siblings’ coping strategies and emotional resilience. This subsequently improves the overall functionality and adaptability of the family unit. These groups assist NT siblings in managing stressors by fostering peer networks, enhancing understanding of ASD, and promoting adaptive coping strategies. This leads to improved family dynamics and enhanced sibling relationships.
The goals of these support groups primarily comprise increasing knowledge about ASD, enhancing sibling relationships, promoting emotional expression, developing problem-solving skills, increasing self-esteem, and building peer networks. Some interventions, particularly focused on adult NT siblings, also aim to strengthen their sense of empowerment and engagement in advocacy. These groups are not intended to replace individual therapy, but rather to offer a safe environment where siblings can express their feelings without fear of judgment and to work alongside their peers to build their coping mechanisms.
Various programs have developed specific activities and session content to meet these goals. For instance, Project SibSTAR focused on educational and psychological benefits for NT siblings and included didactic group reviews, discussions, and role-plays as activities. 25 Other support groups involved activities around discussing family structures, siblings’ knowledge about autism, and challenges they face with their siblings with ASD. Such activities can encourage siblings to share their emotional troubles within a closed group of individuals with similar experiences. In some cases, it also offers them opportunities to work in a peer group setting to problem-solve emotionally challenging situations they face daily. Some groups incorporate discussions about famous people with autism or guest speakers, such as older siblings, to provide additional perspective. Groups might also include activities that highlight each NT sibling’s unique qualities to foster a positive self-concept. More recently, online support groups, like iSibWorks, have demonstrated the ability to connect siblings virtually, facilitating access and support, especially relevant during times of limited social interaction, such as the COVID-19 pandemic.
Studies indicate that sibling support groups have several positive effects on the psychosocial well-being of NT siblings, thereby addressing aspects of symptom management and, in some cases, symptom reduction; however, results vary across studies. The most significant outcome observed across these studies is that siblings found support groups to be a safe space for expressing themselves and sharing their experiences.12,14,16,17,25,26 Studies observed that the support group facilitated the development of peer networks among NT siblings through open communication within the group.2,14,17,19 The peer-led format and the inclusion of humor and shared emotions create a safe environment for siblings to express their emotions. The principles of sibling support address individual needs (recognition, validation, social-emotional well-being, knowledge, and skills), relationships, connection and community building, advocacy, and research. 12 The study by Burke et al. set the expectations for sibling support groups as sibling solidarity, empowered participants, and increased awareness of available resources. 15 The studies suggested that sibling support groups may have positive effects (lifelong responsibility, dedication to family, self-esteem, and resilience). Still, they did not affect the quality of life and social support scale.16,17,26 Improved sibling relationships, adjustments, and their quality were also reported through adaptive coping strategies.2,19,25
Studies indicated that NT siblings exposed to age-appropriate knowledge about ASD showed increased knowledge of ASD.14,16,25 This increased awareness of ASD can help siblings understand their siblings’ behaviors and reduce feelings of isolation. These groups facilitated discussions and problem-solving activities, equipping the siblings with improved adaptability and stress management skills. A few studies also reported improvements in symptoms of depression and anxiety, and other behavioral measures.19,27 Studies indicated that participants benefited from working on their self-concept19,27 and adaptive coping strategies as part of the support groups.13,15,25 Reciprocal interactions, suggesting potential positive effects of support groups on sibling relationships, were also observed by specific studies.2,14 There are improvements in the quality of interactions between NT siblings and their siblings with ASD who attend a support group, compared to control groups. Acquiring knowledge and information about ASD, creating problem-focused coping strategies, and possessing a peer network are associated with more positive perceptions of ASD and better relationships. 2 Studies of adult siblings suggest that they often see themselves as helpers, mentors, and substitute parents. The “Siblings FORWARD” program, designed to provide adult siblings with skills and knowledge for joint future planning, reported strong interest from siblings, autistic adults, and service providers. This reflects the growing awareness of the lifelong, supportive roles that siblings often play. 18 The support groups for adult siblings also indicate higher empowerment post-intervention and a desire to bring about systemic change. 15
However, there are inconsistencies in the findings across studies, with some reporting limited statistically significant changes in the outcomes listed above. A subset of studies7,25,26 did not find a significant impact of support groups on improving the symptoms of depression and anxiety. Similarly, a few studies did not note a significant improvement in behavioral measures.16,26 Reciprocal interactions, suggesting potential positive effects of support groups on sibling relationships, were also not observed to show a significant boost by certain studies.2,19,25
The inconsistent findings indicate the need for further research. It also highlights the need to focus on the impact of variables, such as the severity of sibling symptoms with ASD or other environmental factors, like the pandemic, that may moderate the impact of a support group. The needs of NT siblings can also vary widely, depending on factors such as the number of siblings, birth order, gender, age, and socioeconomic status. This implies that interventions customized to the individual needs of siblings are essential.
It is also important to note that most studies originated from the US or Canada. Meltzer notes that the USA, Canada, the UK, Australia, and New Zealand have historically had the most established sibling support initiatives. 12 The extended history of recognizing and supporting siblings of individuals with disabilities in these regions could be a potential reason for more research originating from them. Zucker et al. explicitly mention receiving grants from the Organization for Autism Research and the City University of New York that partially funded their work. 2 This suggests that funding support for research and the implementation of support groups in these countries could also be a potential factor influencing more research initiatives from there. Meltzer also points out that national location and prevailing policy concepts (e.g., “carers” and “young carers” policy in Commonwealth countries) can influence how sibling support is implemented and researched. 12
Although support groups are useful, results indicate that some challenges, such as helping a sibling work through complicated feelings or behaviors, may need intervention beyond what is typically provided in a support group. Deeper research with follow-ups over an extended period is essential to concretely ascertain which components of support groups are most beneficial for NT siblings.
Strengths
Methodology Strengths
The review encompasses literature published between 2010 and 2024, covering a meaningful timeframe necessary for analysis while minimizing the inclusion of outdated findings. A team of four authors conducted the review, ensuring a thorough, collaborative peer review process.
Strengths of Shortlisted Studies
Studies covered a wide range of intervention mechanisms to engage NT siblings, including awareness sessions, group discussions, role-plays, behavioral therapies, dyad games, mentoring, and self-concept enhancement. This provided a better understanding of which approaches are most effective with NT siblings. Studies also used several tools to assess the baseline conditions, monitor interim progress, and measure the intervention outcomes.
Limitations
Methodology Limitations
The search only considered peer-reviewed articles written in English between 2010 and 2024. The choice of keywords, the databases used, and the inclusion of only English-language papers may have limited the scope of our findings. It is also possible that the decision-making process, including peer reviews, in extracting and synthesizing data, could have introduced some subjectivity.
Limitations of Shortlisted Studies
Several limitations were noted across the shortlisted studies. A small sample size was identified as a limitation across most studies, restricting statistical power and the ability to generalize findings to broader populations. Voluntary participation in a study rather than enrollment by the researcher was reported as a limitation in some studies, as this could introduce bias into the results and limit their generalizability. A lack of demographic diversity, particularly in terms of race, ethnicity, culture, and socioeconomic status, hinders the understanding of how cultural values may influence NT siblings’ roles as caregivers or advocates and the effectiveness of support groups, necessitating culturally responsive interventions in future research. A few studies quoted the lack of a control group as a limitation, making it difficult to attribute observed changes directly to the intervention. Self-report measures with no direct observation were used in certain studies (n = 3), noting that such methods can introduce biases and inaccuracies. A few studies (n = 3) conducted during the COVID-19 pandemic noted that the pandemic may have influenced participant availability, interest, and the nature of stressors experienced by families.
Future Research
Future research should explore various strategies to address these limitations. First, longitudinal studies are necessary to examine the enduring effects of support groups on the mental health, sibling relationships, and coping mechanisms of NT siblings, thereby providing insight into the long-term benefits of such interventions. Second, to accurately represent their unique caregiving and advocacy roles and qualitative experiences, developing and evaluating interventions tailored for adult NT siblings through mixed-methods approaches is essential. Third, enhancing generalizability and accounting for socioeconomic and cultural factors in assessing intervention efficacy necessitates research that employs randomized controlled trials and incorporates larger, more diverse sample sizes. Ultimately, integrating self-reports with objective outcome measures, such as observational coding of sibling interactions, will help mitigate biases and provide a more comprehensive understanding of the effects of support groups.
Conclusion
Overall, the studies suggest that sibling support groups can be a feasible and acceptable intervention to promote the psychosocial well-being of siblings of children with ASD. Findings support the development of tailored, evidence-based sibling support programs and underscore the need to recognize sibling support as a distinct domain in health and social care policy and funding. Support groups have shown potential in symptom management and reduction via enhancing knowledge about their siblings’ condition, creating peer support networks, and improving mental health and coping skills. The inconsistent findings across studies indicate the need for more rigorous research.
The review suggests that we should develop customized, evidence-based support group programs within health and social care policy. India is still at a very early stage of sibling research, which requires collective effort among clinicians, researchers, and policymakers.
Supplemental Material
Supplemental material for this article available online.
Footnotes
Acknowledgements
We sincerely thank Ms. Harshita Shetty from CARE-ADD, St. John’s Hospital, for her invaluable guidance during the initial stages of writing the scoping review.
Copyrights
No copyrighted material is used.
Data Sharing Statement
This is a review article, so no data will be generated to share.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Declaration Regarding the Use of Generative AI
No part of this article was written or generated by a generative AI tool. The authors take full responsibility for the accuracy, integrity, and originality of the published article.
Ethics Approval
No ethical approval is required, as this is a review article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Prior Publication
The article was not presented at meetings or conferences.
Simultaneous Submission to Another Journal or Resource
The article has not been published in any other journal or resource.
Statement Regarding Generative AI
The authors attest that no generative AI technology was used to generate text, figures, or other informational content in the manuscript.
References
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