Our younger son was a subject in the "Baby Sibs" study at Johns Hopkins, and while we lost a small bet with the universe in that he also is on the autism spectrum, we gained, at least briefly, the confidence that his development was being monitored while we launched into an array of interventions for his older brother.
Like a folk "worry box", I put my concerns about baby's development away and was able to enjoy his infancy for what it was, at least in small measure. When he failed to show a wider array of normal responses at 14 months, we went to Early Intervention with a well respected referral and got a program in place lickety-split. With all that we had on our plate, we might have let baby's delays go unaddressed for quite a while, particularly since his presentation did not have the stark regression that we saw in our older son.
In the bargain, we contributed to science, as the early films of my younger son confirmed Dr. Landa's suspicion that subtle social weaknesses would be apparent even at six months, and this evidence is helping in the development and refinement of screening measures that will reliably build at least the possiblity of effective interventions for very young children.
When we participated in Baby Sibs, it was a NAAR funded study, which has now been picked up by the National Institutes of Health and expanded to more sites, including the Yale Child Study Center. They need both infant siblings of ASD kids, and control infant siblings of non-affected kids. If your family can make the trip to New Haven, I strongly encourage you to consider participating.
The announcement from Autism Speaks follows.
Your Next Child Can Be Monitored from Birth for Vulnerabilities Associated with Autism
High Risk Baby Siblings Project at Yale looking for Participants
Autism Speaks continues to support the High Risk Baby Siblings Research Projects currently being conducted at universities around the nation. By studying the younger siblings of children with autism, clinicians are identifying risk factors associated with autism. Their goal is to lower the age at which autism may be reliably diagnosed. Early identification is key to improving the eventual outcome of children with autism and related disorders.
At the Yale Child Study Center in New Haven, researchers are studying how infants from birth to 24 months engage visually with people and objects around them. Yale is looking to expand participation in this project and is actively seeking to enroll parents of children with autism who are pregnant. If selected for the study, your baby will watch brief animated videos and look at pictures. He or she will play with toys, listen to sounds and interact with experienced professionals. Babies usually love it and parents find the feedback extremely informative. Babies who participate are monitored closely for any signs of autism from birth to 24 months, and beyond. Compensation is available for participants.
To learn more about participating in this study, please contact Irene Zilber by email at Irene.Zilber@yale.edu or by phone at (203) 785-6237. Also, to learn more about this research project please visit www.autism.fm/babysibs.
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