Share

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

More Research studies from this topic: Diagnosis

Autism Biomarkers Consortium for Clinical Trials
In-person participation required
Compensation Skills in Autism
Online web-based study
Autism-relevant profiles in neurogenetic syndromes
Online web-based study
Multi-Site Validation Study of Eye Tracking-Based Measure of Autism Symptom Severity
In-person participation required
Family Experiences in Fragile X and Autism
Online web-based study
The EMBRACED Study
Online web-based study
LAAMB Study
In-person participation required
Center for Brain Disease Diagnosis at the NRI
In-person participation required Online web-based study
San Diego State University Toddler MRI Project
In-person participation required
Autism Home Videos for Children
Online web-based study
Cute Aggression in Children with and without Autism Spectrum Disorder
Online web-based study
Identifying barriers to participation in autism research for Black families
Online web-based study
Autism Intervention Research Network on Behavioral Health
Online web-based study
Simons Searchlight
Online web-based study
The Autism Biomarkers Consortium for Clinical Trials: Confirmation Study
In-person participation required
Predicting and Optimizing Language Outcomes in Minimally Verbal Children with Autism Spectrum Disorder (POLO)
In-person participation required
Adolescent Communication of Emotion Study
In-person participation required
Exploring Positive and Negative Dimensions in Autism Spectrum Disorders (EXPAND)
In-person participation required
MARBLES
In-person participation required
CHARGE
In-person participation required
ECHO
In-person participation required
Imaging Cognition and Neurodevelopment (ICAN)
In-person participation required
Infant-Caregiver Synchrony in Autism
In-person participation required
Managing Feeding and Sleep at Home
Online web-based study
MRI Study for Prediction of ASD
In-person participation required
Walking and Talking in Autism
In-person participation required
What do you Eat?
Online web-based study
Autism ETA Cohort Study
Online web-based study
RARE-X Data Collection Program
Online web-based study
Cognitive Functioning in Children
Online web-based study
Infant Brain Imaging Study for Autism
In-person participation required
The Autism Biomarkers Consortium for Clinical Trials: Confirmation Study
In-person participation required
Pubertal, Psychosocial and Physiological Development in Females with Autism
In-person participation required
Investigating Depressive Symptomatology in Adolescents with ASD and ADHD
Online web-based study
Genetics of Autism in Latinx Ancestries
In-person participation required
Caregiver-Endorsed Strategies for the Treatment of Sensory Reactivity Symptoms in Children with Neurodevelopmental Disorders
Online web-based study
Social Dynamics and Early Visual Experiences
In-person participation required
Validation of Autism Diagnostic Interview-3rd Edition (ADI-3)
In-person participation required
Assessing Motor Control across different Sensory Environments in Individuals with and without Autism Spectrum Disorder
In-person participation required
Perception of Conversations Survey
Online web-based study
WATCH Motor Development Study: Advancing Screening Tools for ASD
In-person participation required
Autistic Adolescents’ Perspectives on Behavioral Interventions
Online web-based study In-person participation required
The Rhode Island Consortium for Autism Research and Treatment (RI-CART) Adolescent to Young Adult Study
Online web-based study In-person participation required
The Investigation of Genetics Exome Research (TIGER-3)
In-person participation required Online web-based study
A Pilot Study of Transcranial Direct Current Stimulation (tDCS) in Children with Autism Spectrum Disorder (ASD)
In-person participation required
A qualitative study to develop global impression items and a goal attainment scaling approach as outcome measures in paediatric autism
Online web-based study
Parent Perceptions in Developmental Disabilities
Online web-based study
Research Studying Pimavanserin in Irritability Associated with Pediatric Autism Spectrum Disorder
In-person participation required
Supporting nonverbal communication priorities for adults on the autism spectrum
Online web-based study
SMASS
Online web-based study
Mapping brain function in children with autism spectrum disorder with diffuse optical tomography
In-person participation required
Children Learning Language Collaboration Project
In-person participation required
Eye-tracking In-person Research
In-person participation required