Frequently Asked Questions
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What is the Next Gen Sibs study about?
It studies babies whose parents have a sibling with autism, to better understand early signs and support development through expert monitoring.
Who is doing this study?
There are eight study sites in the United States, Canada, and United Kingdom. The Next Generation Siblings project is jointly funded by The Autism Science Foundation, The Hilibrand Foundation, and the ARIA Initiative.
Who can participate?
Parents who have a sibling diagnosed with autism and a baby aged 12 months or younger. Expecting parents or parents planning to have a child are eligible to participate, as well.
Note: In order to participate in the study, at least one biological parent must have a biological sibling with an autism diagnosis. We are interested in the very early trajectories of development, so we hope parents contact us before the infant is one year of age
What does participation involve?
Up to several 2-hour visits (in-person or virtual) between 12–24 months, plus short questionnaires.
What happens during visits?
Your baby will do play-based activities to assess development. Some visits include guided play or eye-tracking.
What happens to the data that is collected?
In order to gather enough data to make meaningful observations about early development, information gathered from each visit will be shared with the participating sites and made available to other researchers in the Baby Siblings Research Consortium. However, no personal information (name, date of birth, address, email) will be shared with anyone, and there will be no way to link the information to you specifically.
Where will the study take place?
Participation can be in person, virtual, or hybrid (combination of in person and virtual). In-person visits will take place at one of 8 sites across the United States, Canada, and United Kingdom.
What information will I receive from the clinician?
Families will receive feedback on the developmental evaluations, as well as a diagnostic evaluation, if needed. They may also receive other reports from clinicians that may help direct services, if those are requested.
Who should I contact to join?
Fill out the form in the contact page and a team member will follow up.
Is participation voluntary? Can I withdraw?
Yes, participation is fully voluntary. You can opt out anytime.
Will I be compensated?
Families will receive a gift card as a token of appreciation for participation. They will also receive reports and feedback from the clinicians to help entry into early intervention programs, if needed.
I’m autistic and I have a baby, can my family participate?
For this study, eligibility is based on whether one of the baby’s parents has a sibling with autism. If you have an autism diagnosis yourself, that does not exclude your family as long as you or your baby’s other parent also has a sibling with a diagnosis.
This Study is Enrolling Expecting Parents, or New Parents, Who Have a Sibling With Autism.
If your baby is 12 months or younger, you may be eligible to join this groundbreaking study.