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Challenges and Growth: Lived Experience of Adolescents and Young Adults (AYA) with a Sibling with ASD

Abstract

Adolescent and young adult (AYA) siblings of individuals with autism experience unique challenges that can promote both growth and emotional maladjustment. This study explored sibling and parent reports of siblings’ lived experiences and identified learning, stressors, and concerns from those experiences. 20 neurotypical (NT) AYA siblings (ages 13–24), and 21 parents were interviewed. Themes that emerged from the data analysis included: (1) learning, empathy, and compassion (2) relationship between the degree of functional impairment and the nature of the sibling relationship; (3) reluctance to share information about siblings with peers; (4) hypervigilance associated with unpredictable behavior; (5) worries and concerns about the future. These findings contribute to the existing literature on the impact and nature of neurotypical siblings’ lived experience.

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Funding

Our work was supported by Autism Speaks and cooperative agreement UA3 MC11054 through the US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to Mass General Hospital.

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Authors and Affiliations

Authors

Contributions

DI, KK, GPL, LT, EP conceptualized the design of the study. DI, LF, CL,BG were responsible for data collection and implementation of intervention. DI, LF, KK, LT, were responsible for data analysis. DI, LF,KK,LT drafted the mauscript and provided critical review along with CL,BG, GPL,SC. All authors approved the final revisions of the manuscript.

Corresponding author

Correspondence to Dorothea Iannuzzi.

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Conflict of interest

We have no conflict of interest to disclose.

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Appendices

Appendix A

Experiences Related to Being a Sibling (Main Questions from Sibling Interview Guide)

How would you describe your relationship with your sibling with autism?

What are the good things about your relationship?

What are the challenging things about having a sibling who has autism?

Probes: sibling behaviors, difficulty getting attention, loneliness, bullying, problems with parents

Probe: Can you think of something difficult or tough that happened, related to being a brother or sister of someone with autism? What happened? What was tough about it?

What do you do when [select a key difficult topic mentioned above] happens?

How do you tend to feel during or right after [difficult topic] happens?

Does having a brother or sister with autism affect your relationships with other people in your family? How does it affect your relationships with them?

Does having a brother or sister with autism affect your relationships with other people outside of your family? How does it affect your relationships with them?

What do you think you have learned from being a brother or sister to your sibling?

Are there other ways that having a brother or sister with autism has affected you?

Perceptions of Sibling Experiences (Main Questions from Parent Interview Guide)

How would you describe the relationship of your children who do not have autism (the sibling) with your children who have autism?

What good things do you see in the relationships?

What are the challenging things that you notice in your family, about being a brother or sister to a sibling who has autism?

Probes: facing difficult behaviors from sibling who has autism, difficulty getting attention, loneliness, bullying, conflict with parents

Probe: Can you think of something recent that happened, that was difficult or tough for the sibling without autism? What happened? What was tough about it?

How do you see your children without autism react when [select a key difficult topic mentioned above] happens?

What emotions do you see your children without autism experiencing when [select a key difficult topic mentioned above] happens?

Do you think that the things we just discussed affect the brother or sister’s relationships with you? With other people in your family? If no: what do you think it doesn’t affect them? If yes: how does it affect them?

Overall, what do you think your children have learned from being a brother or sister to a child with autism?

Are there other ways that you think having a brother or sister with autism has affected your children?

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Iannuzzi, D., Fell, L., Luberto, C. et al. Challenges and Growth: Lived Experience of Adolescents and Young Adults (AYA) with a Sibling with ASD. J Autism Dev Disord 52, 2430–2437 (2022). https://doi.org/10.1007/s10803-021-05135-0

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  • DOI: https://doi.org/10.1007/s10803-021-05135-0

Keywords

  • Sibling
  • ASD
  • Stress coping
  • Stressors
  • Resiliency
  • Lived experience