Early detection is the key to helping children on the autism spectrum realize their full potential. Experts tend to agree that autism can be reliably diagnosed at age 3, when symptoms are present. Infants’ behavior is much more limited, making earlier detection a challenge, but researchers at UCLA are hoping to learn enough to change that.
By studying behavior along with brain differences that could signal communication delays, they hope to create a model for autism diagnoses as early as age 1, before the core symptoms of autism present themselves.
The UCLA Center for Autism Research and Treatment is looking for 105 infants to participate in this study. Eligible infants are younger than 6 weeks old, exposed to spoken English at least 50 percent of the time, and have:
- More than one sibling with autism,
- One sibling with autism and an extended family history of the disorder, or
- No family history of autism or other developmental disorders.
Participating infants will be evaluated at ages 6 weeks; 3, 6 and 9 months; and 1 and 3 years. Researchers will use several different methods to look at each baby’s brain development. “First, we will take pictures of your sleeping infant’s brain in an MRI machine at the 6-week and 9-month visits,” explains Carolyn Ponting, research associate and project coordinator of the UCLA Infant Sibling Study. “For this visit, we will schedule you to come in around your infant’s typical bedtime, so that we can use your natural bedtime routine to get him to sleep (i.e., we won’t use any sedatives or anesthesia). Your infant will be asleep during the entire scan and for a portion, we will play recordings of different types of human speech. The pictures we take show us which brain areas are important for language and communication, and may show whether, in some infants, these regions are not working in the same way.”
The 3, 6, 9 and 12 month visits will include EEG and eye tracking tests to see how babies’ brains respond to events in their environment. “Your infant’s head will be measured with a tape measure and an EEG net will be selected to fit his or her head,” says Ponting. “This net is completely non-invasive and has small sponge sensors that simply rest on the scalp. It kind of fits like a swim cap. The net will be soaked in warm water before being placed on your baby’s head and your baby will sit on your lap in front of a monitor and an eye-tracker to watch various images and movie clips.
Researchers will also administer developmental assessments of babies’ motor, visual receptive and language skills, and test babies’ behavioral, social and communicative development, and ask parents to complete questionnaires about their child. “We hope to find differences in development patterns between infants who may go on to develop language or communication difficulties and those who don’t,” says Ponting.
If researchers note signs of delay, they will let parents know as soon as possible. Infants who show signs of concern before age 2 will have the option of participating in a free early-intervention program at UCLA.
In addition, researchers will take blood from the child (at age 3) and all immediate family members to look at the possibility of genetic markers for language delay. The genetic information will be added to a national database – without participants’ personal information attached – so that it is available for use in future research.
All evaluations will take place at UCLA, at the Semel Institute (760 Westwood Plaza, L.A.). Families are compensated $30-$50 for each testing visit, to help cover the cost of parking and transportation. Evening and weekend scheduling is available for most visits. Participation in the study is free, and medical insurance is not required.
Participating families will also receive feedback on their babies’ performance on developmental assessments, pictures of their babies’ brains, and access to the developmental psychologists, clinical psychologists and neurologists on the study team for any questions that come up about their children.
All data provided by parents or gathered about infants during the study are kept private, and not disclosed without parents’ written permission. Some data – with children’s names and personal information removed – will be shared with the National Database for Autism Research, and will be available to help investigators worldwide study potential diagnosis and treatment of autism spectrum disorders.
“This is the first infant sibling study that has sought to image babies starting at 6 weeks,” says Ponting, “so the results will be an important contribution to the field of language development in autism.”
Parents who are interested in participating in the study should call 310-825-3478 or email firstname.lastname@example.org.