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Wednesday, February 24, 2016

My Little Cricket’s Delay: UCLA Autism Sibling Study – My Little Rose’s 6 Month Visit

The first time someone mentioned that my son might be Autistic I was four days away from giving birth to my Little Rose. To say that I have been at a certain level of fear and terror since then is an understatement. Ever since I found out that as a sibling My Little Rose has a 20% higher chance of also being autistic I have been freaking out even more. I didn’t notice that my Little Cricket was different until he was around 18 months old. Up until that point I had believed that he was a total typically developing child. It was going to be awful waiting 18 months to see if my daughter also develops characteristics of Autism.

I stared at my perfect little girl and wondered if she would fall into her own world as well. I felt powerless to do anything about it.

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And then I found out about the UCLA Autism sibling study. Younger siblings of children with ASD are tested at 3 months, 6 months, 9 months, 12 months, 18 months and 3 years. These tests contain EEG’s, psychological tests, eye tracking studies and MRIs. The research will create a bank of data on the children. Later those siblings that are found to have ASD data will be invaluable to try and find earlier indicators that a child is autistic.

We were lucky; I noticed signs of my son being different and was able to get an early diagnosis at 2. Most children in the United States don’t get diagnosed until 4 years of age.

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My Little Rose will hopefully be part of a group that will eventually help parents know if their child is autistic at a younger age, allowing them to start therapy sooner and in turn give their child a better chance of overcoming some of the more extreme autistic hurdles. As an added benefit, at any point during the study if my Little Rose exhibits any red flags she will be eligible to enter the Early Intervention Baby JASPER program. I cannot tell you what a relief it is that my daughter will be monitored so closely by trained professionals.

We were lucky to get into the study since we missed the 3 month visit. However I found out about the study just as my Little Rose turned 6 months. So we were able to squeak in. Today we went in for our session. It consisted of an EEG, where they monitored my daughter’s brain while she watched a series of videos and patterns of animation. The next portion they tracked her eye movements while watching a Snoopy cartoon and a portion of a Sesame Street episode. The final piece was performing a psychological test where they asked questions and performed several simple tasks. All in all the appointment took about 2.5 hours. I will get the results of how she did, and if there are any concerns so far in her development, in about a week and a half.

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Hope to God everything is ok.

Description of the study from UCLA:

“Here is a summary of visits Charlotte would participate in:
6mo- EEG, eye-tracking and a short behavioral assessment (2hrs)
9mo- EEG, eye-tracking, MRI (4-5 hours, depending on how quickly she falls asleep)
12mo- EEG, eye-tracking, behavioral assessment (3 hours)
18mo- Behavioral assessment (2hours)
24mo- Questionnaires sent home
36mo- Behavioral assessement (4 hours)

We are interested in identifying accurate biomarkers of autism and autism spectrum disorder within the first year of life by comparing infant siblings of children with autism to low-risk infants. Infants in our study are first seen at six weeks of age, with follow up assessments at 3, 6, 9, 12, and 36 months. All of these visits will take place here at UCLA.

There are several components to this study. The first part is designed to show how the brains of typically developing infants differ from those of infants who may go on to develop language or communication difficulties. This is done by taking pictures of your sleeping infant’s brain in an MRI machine at the 6-week and 9-month visits. 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, will listen to 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. *See further Information about these scanning visits below*

We also use EEG and eye-tracking tasks to look at brain activity and looking patterns in response to events in the environment. At the 3, 6, 9, and 12 month visits, your infant’s head will be measured with a tape measure and an EEG net will be selected to fit her head. This net is completely non-invasive and has small sponge sensors that simply rest on the scalp, so 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. The EEG net would only be on your infant's head for the entirety of our EEG paradigms, which is about 15-20 minutes.

We will also administer a developmental assessment of your infant’s motor, visual receptive, and language skills, as well as tasks that look at your infant’s behavioral, social, and communicative development at 6, 12, and 36 months. After these assessments, we will give you feedback on your child’s performance. If at any point we see signs of delay, or behaviors symptomatic of autism, or if we have any other concerns, we will bring that to your attention as soon as we can. If infants happen to show signs of concerns at 12 months of age, they will be referred for possible participation in an early intervention program at UCLA.

At several of the time points, we will also ask you to complete some forms and questionnaires about your child. These parent reports help us get a more complete view of your child’s development. At 24 months of age, we will send you some of these questionnaires by mail, and you will not be required to come to UCLA.

Finally, we have a biological component to this study. It involves a blood draw with all of the immediate family members in order to look at the possibility of genetic markers for language delay. Additionally, these genetic samples are sent to a national repository at Rutgers University, where it would be made available for researchers who are interested in autism and its connection to genes. These genetic samples are coded in a way that your names and identities are kept confidential. We will wait until your infant is 36-months of age before collecting a blood sample, and we provide numbing cream at that time to minimize any discomfort of the draw.

You will be compensated $50 for each MRI scanning visit and $30 for each EEG/eye-tracking visit to UCLA in order to cover the costs of parking and transportation. Your participation in any of the components of this study is voluntary; however, we may also choose to discontinue your participation if not enough requirements are met.

Finally, I wanted to provide some more information pertaining to the MRI scans that we would be performing at six weeks and nine months of age during this study.

We use an open MRI, meaning it is a tube so you can see out both ends of the scanner. We do not use contrast, thus there are no injections (particularly radiation) associated with the study. We also have parent's use natural bed time routines to put infants to sleep and we never use anesthesia. The pictures are taken due to magnets and radio waves so there is no radiation whatsoever. It is the equivalent to listening to the radio in your car. I've included some links below that lead to a couple sites covering safety of MRI.

MRI on infants have been done safely for over 20 years and is approved by the US Food and Drug Administration (FDA) for use with infants. Tests done on the MRI have shown that it has no harmful effect on living organisms. The software used for our MRI (Trio 3.0 Tesla by Siemens) makes sure that the MRI procedure operates very safely within the parameters set by the FDA.

The greatest risk during MRI is the introduction of metal objects into the scan room. Infants and parents will be determined to be MRI safe before entering the scanner room. A minimum of two MRI safety trained researchers will be present for the duration of the scan and prepared to take the infant out at the first sign of distress or waking and the infant will be returned to you for comforting. If deemed MRI safe, a parent is able to stay in the scan room for the scan. If the parent is unable to be in the scan room or would prefer to observe from the control room, a researcher will observe the infant during the scan.

Another risk of MRI is the loud noise it makes. We utilize special hearing protection that has been designed specifically for infants. They can hear background noise but we make sure it is a reasonable and safe amount of sound. The majority of infants sleep well throughout the process which is good evidence that our efforts to reduce noise levels are successful! Parents who stay in the scan room to observe their infant will be provided earplugs and headphones.

Here are the links that were referred to above:
http://www.fda.gov/Radiation-EmittingProducts/RadiationEmittingProductsandProcedures/MedicalImaging/ucm200086.htm
http://www.radiologyinfo.org/en/safety/index.cfm?pg=sfty_mr
http://www.mrisafety.com/safety_article.asp?subject=170

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