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Next Generation Siblings: How Having a Sibling with ASD Affects One’s Decision to Have Children

August 13, 2022 - August 13, 2023

While siblings of individuals with ASD are at greater risk for ASD and other developmental disorders themselves, very little is known about how autism affects the children of these siblings (the “next generation”). This project is aimed at laying the groundwork to better understand how autism affects the next generation. This study will focus on establishing the infrastructure to examine the next generation of families affected by ASD by engaging adult siblings and their spouses/partners in focus groups; this feasibility study will pave the way for a phenotyping study of the next generation to examine the early signs and symptoms among the second-degree nieces and nephews of individuals with ASD.

What are the goals of the study?

To gather input on how having a sibling with ASD affects your family planning decisions and your perspective on participating in research.

What will happen during the visit or online?

If eligible, you will be invited to participate in a 2-hour focus group via Zoom alongside other siblings (and spouses/partners of siblings) of individuals with ASD to provide insight into your experiences, your current feelings surrounding family planning decisions, and your willingness to participate in future research. You will be compensated for your time and input.

How will this help families?

Participation in this study will help to establish a research protocol that can assist other siblings of individuals with ASD. Participation will also assist researchers in knowing what topics need to be addressed through future research and/or clinical projects to help support the needs of unaffected siblings as well as the needs of their affected siblings.

Eligibility Criteria

Eligible participants must:
1) have a sibling diagnosed with ASD or be the legal spouse/partner of a non-affected sibling
2) not have a diagnosis of ASD themselves
3) have verbal English proficiency
4) be of child-bearing age (i.e., 18 – 49 years of age)

View the study flyer here.

Contact Information

Nicole Rosen – nrosen@mednet.ucla.edu

Research Study Website

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