Understanding how genetic risk information for autism affects parents
Official title: Project 2: Psychosocial impact of autism genetic risk information on parents
Funded at Columbia University Health Sciences · NIH-10916385 · Data updated 2026-11-12
This study is looking at how parents feel and cope after finding out their newborn has a higher chance of autism, by checking in with them right after they get the news and again a year later to see how their emotions and relationships change over time.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Columbia University Health Sciences NIH-funded |
| Lab location | 1 site (New York, United States) |
| Project start | September 6, 2022 |
| Project end | August 31, 2027 |
| Funding year | 2024 |
| Award (this year) | $186,214 |
| NIH project number | 5P50HD109879-03 |
| Project ID | NIH-10916385 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are parents of newborns who have undergone genetic testing indicating an elevated risk for autism.
✕Less likely to help
Parents of children who do not undergo genetic testing or those whose children are not identified as at genetic risk for autism may not benefit from this research.
What this research studies
This research investigates the psychosocial effects on parents who learn that their newborn has an elevated genetic risk for autism. By surveying parents immediately after they receive this information and again after one year, the study aims to assess changes in their emotions, relationships, and future expectations. The goal is to understand how this genetic information influences parents' experiences and decisions during the critical early years of their child's life.
Why it matters
Potential benefit: If successful, this research could help families better navigate the emotional and relational challenges that arise from receiving genetic risk information for autism.
How similar studies have gone: Previous research has shown that genetic information can significantly impact family dynamics and parental decision-making, suggesting that this study's approach is grounded in established findings.
Where this research is happening
-
Columbia University Health Sciences
New York, United States Active
Researchers
- Principal investigator: Appelbaum, Paul Stuart — Columbia University Health Sciences
- Study coordinator: Appelbaum, Paul Stuart
Related research
Other NIH-funded projects on the same topics.
-
Psychosocial effects of newborn autism genetic risk on families
This grant tests how telling parents that their newborn has a genetic risk for autism affects their feelings, relationships, and plans over the first two years.
-
PEP Talk for Parents: Helping Young Children With Autism Access Early Education and School Services
A program helps pediatricians talk with families of very young children with autism to speed up access to early intervention and school-based services.
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How learning a newborn's genetic risk for autism affects parents
This project looks at how parents feel, think, and act when they are told their newborn has an increased genetic chance of developing autism.
-
Support program for parents of young children diagnosed with autism
This study is testing a new program called Autism Parent Navigators, which offers friendly support to parents of young kids recently diagnosed with autism, helping them find their way through challenges and services to create a better home environment for their children.
-
Neural roots of how autistic adults understand word meaning
A study to understand how adults with autism process word meanings in the brain, aiming to improve language support.
-
Sleep and daily rhythms and brain development in autism
Aiming to understand how sleep problems and daily activity patterns affect brain growth, thinking skills, daily functioning, and autism symptoms in children.
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.