Page 1 of 16

British Journal of Healthcare and Medical Research - Vol. 12, No. 02

Publication Date: April 25, 2025

DOI:10.14738/bjhmr.1202.18469.

Calleja, C., & Agius, M.-R. (2025). Living with a Sibling who is on the Autism Spectrum: The Siblings’ Perspective. British Journal of

Healthcare and Medical Research, Vol - 12(02). 213-228.

Services for Science and Education – United Kingdom

Living with a Sibling who is on the Autism Spectrum:

The Siblings’ Perspective

Colin Calleja

ORCID: 0000-0001-6665-4304

Faculty of Education – University of Malta. MALTA

Maia-Rhys Agius

Faculty of Education – University of Malta. MALTA

ABSTRACT

This study explores the lived experiences of neurotypical siblings who have a

brother or sister on the autism spectrum. Drawing on qualitative case studies of

three adolescent siblings, the research investigates the emotional, social, and

developmental impacts of these relationships. Through semi-structured

interviews, the study identifies themes such as caregiving responsibilities, the

emotional burden of unequal attention, and future caregiving concerns. The

findings highlight both the challenges and growth opportunities associated with

these sibling relationships. By examining these experiences within the unique

cultural context of Malta, this study contributes to the broader discourse on

inclusion and family dynamics in autism spectrum disorder (ASD). Implications for

educational systems, family support programmes, and future policy developments

are discussed.

Keywords: Neurotypical Siblings, Autism Spectrum Disorder (ASD), Sibling

Relationships, Family Dynamics, Caregiving Responsibilities

Families with a member on the autism spectrum navigate a unique set of challenges and

dynamics, especially siblings who play crucial roles in caregiving and emotional support.

Autism spectrum disorder (ASD), a neurodevelopmental condition, is characterised by

differences in social communication and behaviours, impacting not only individuals but also

the relationships within their families. While research has extensively examined the

perspectives of parents raising children with ASD, the experiences of neurotypical siblings

remain underexplored, particularly in small, close-knit cultural contexts such as Malta.

This study investigates the lived experiences of neurotypical siblings growing up with a sibling

on the autism spectrum. The research focuses on adolescents, a developmental stage marked

by identity formation, emotional growth, and increasing responsibilities. By capturing these

experiences through qualitative case studies, this research sheds light on the emotional, social,

and developmental implications of these sibling relationships.

AIMS, OBJECTIVES, AND RESEARCH QUESTIONS

The study aims to understand the multidimensional impact of growing up with a sibling with

autism. It seeks to answer the following research questions:

Page 2 of 16

214

British Journal of Healthcare and Medical Research (BJHMR) Vol 12, Issue 02, April-2025

Services for Science and Education – United Kingdom

1. How does having a sibling with autism affect the life of their neurotypical brother or

sister?

2. What are the long-term concerns of neurotypical siblings regarding their autistic

sibling’s future?

By addressing these questions, the study explores how sibling dynamics influence social

development, academic performance, emotional well-being, and future aspirations.

Significance and Rationale

This research stems from one of the researcher’s personal experience of growing up with an

autistic sibling, which fostered an intimate understanding of the challenges and growth

opportunities within such relationships. While parents often receive extensive support,

neurotypical siblings are frequently overlooked in family dynamics and interventions.

Addressing this gap, the study highlights the importance of their voices in developing more

inclusive family and societal frameworks.

Moreover, the study’s focus on Malta provides a culturally specific perspective that

complements existing research conducted in larger and more diverse contexts. The findings

have implications for educators, policymakers, and support organisations aiming to create

holistic interventions for families affected by autism.

Research Gap

While previous studies have highlighted the resilience and empathy often developed by

neurotypical siblings, they have not adequately addressed the long-term psychological and

social impacts, especially in small cultural contexts. This study contributes to the literature by

offering insights into these dimensions and advocating for targeted support mechanisms for

neurotypical siblings.

LITERATURE REVIEW

Recent literature continues to shed light on the multifaceted experiences of neurotypical

siblings of individuals with Autism Spectrum Disorder (ASD), emphasising both the challenges

and the developmental impacts within family dynamics.

A meta-analysis by Shivers et al. (2019) highlights that neurotypical siblings often experience

a complex interplay of positive and negative emotions, which can significantly influence their

self-identity and personal development. The study emphasises the necessity for support

mechanisms that address these complex experiences to promote well-being among these

siblings (Watson, Hanna & Jones. 2021).

In terms of quality of life (QOL), recent research indicates that siblings of children with ASD

may experience differences in QOL compared to siblings of neurotypical children. A study by

Giallo et al. (2014) found that these siblings often face unique stressors that can impact their

overall well-being, underscoring the need for targeted interventions to support this

population.

While individuals with autism often face challenges in social interactions, they may also exhibit

strengths, particularly in technical or structured domains (Attfield & Morgan, 2006). The

Page 3 of 16

215

Calleja, C., & Agius, M.-R. (2025). Living with a Sibling who is on the Autism Spectrum: The Siblings’ Perspective. British Journal of Healthcare and

Medical Research, Vol - 12(02). 213-228.

URL: http://dx.doi.org/10.14738/bjhmr.1202.18469.

distinct behavioural characteristics of ASD profoundly influence family dynamics, including

sibling relationships.

Furthermore, the influence of having an autistic sibling extends into adulthood, affecting

various life domains, including career choices. Wright et al. (2019) reported that neurotypical

siblings are often drawn to caregiving professions, a decision shaped by their early familial

experiences and the responsibilities they assumed during childhood.

These findings align with studies, such as those by Kaminsky and Dewey (2002), which

documented the dual nature of these sibling relationships—highlighting both the development

of empathy and the potential for emotional challenges. The cumulative evidence underscores

the importance of comprehensive support systems that address the unique needs of

neurotypical siblings, promoting their psychological well-being and personal development.

In conclusion, while the presence of a sibling with ASD presents distinct challenges, it also offers

opportunities for personal growth among neurotypical siblings. Ongoing research and the

development of targeted support interventions remain crucial to enhance the quality of life and

well-being of these individuals.

Autism spectrum disorder (ASD) encompasses a range of neurodevelopmental differences,

manifesting in atypical communication, social interaction, and repetitive behaviours. The

Diagnostic and Statistical Manual of Mental Disorders (DSM-5) defines ASD as a cluster of

developmental disabilities with wide variability in presentation. While individuals with autism

often face challenges in social interactions, they may also exhibit strengths, particularly in

technical or structured domains (Attfield & Morgan, 2006). The distinct behavioural

characteristics of ASD profoundly influence family dynamics, including sibling relationships.

Family Systems Theory provides a valuable framework for understanding the interconnected

roles and relationships within families with a neurodivergent member. In these families, the

presence of a sibling with autism often disrupts established dynamics, necessitating

adjustments by parents and siblings alike. Neurotypical siblings frequently take on caregiving

roles, balancing their own developmental needs with the demands of supporting their sibling

with autism (Angell et al., 2012; Cridland et al., 2013). These roles, while fostering resilience

and empathy, can also lead to feelings of neglect or frustration due to unequal parental

attention.

The emotional landscape of neurotypical siblings is characterised by a complex interplay of

positive and negative experiences. Studies indicate that these siblings often develop heightened

empathy, independence, and patience, stemming from their unique familial context (Aksoy &

Yildirim, 2008). Conversely, they may also experience guilt, stress, and emotional exhaustion,

particularly when faced with societal misconceptions about autism or the disruptive

behaviours of their autistic sibling (Attfield & Morgan, 2006; Moss et al., 2019).

The social experiences of neurotypical siblings are equally complex and multifaceted. While

some develop advanced social skills and tolerance, others report feelings of isolation and

challenges in peer relationships due to their sibling's behaviour (Bagenholm & Gillberg, 1991).

These mixed outcomes underscore the importance of tailored support systems that address