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Autism: I really beat the odds… But HOW???

April 15, 2010 2 comments

This post is from a Guest Blogger, Amy Kelly. Amy is a Community Outreach Liaison for the The EARLI Study in Philadelphia, PA., www.EARLIStudy.org

As a mother of three children, two boys, ages 6 and 9, and a daughter with severe autism who is 8 years old, I often wonder, how did it happen?  How did Annie get autism, and how did I beat the odds of 4:1 boys to girls that have autism and have two typical sons and a daughter who is nonverbal on the autism spectrum?  Interestingly enough my journey through autism (and ask ANY parent… it’s a journey all right) has led me to help the cause at a greater level than just my own daughter’s prognosis. I work as the Community Liaison/Outreach Coordinator for the Early Autism Risk Longitudinal Investigation (EARLI) Study.

The EARLI Study is a nationwide study that was launched last year in June 2009 across four sites in the U.S.:

1. Southeast Pennsylvania (with Drexel University and Children’s Hospital of Philadelphia)

2. Northeast Maryland (with Johns Hopkins University and Kennedy Krieger Institute)

3. Northern California (with Kaiser Permanente Northern California Division of Research)

4. Northern California (with University of California, Davis and the M.I.N.D. Institute)

Researchers are actively enrolling participants who live near the study sites. They are currently seeking 1200 women who already have a child with an autism spectrum diagnosis, and who are thinking of becoming pregnant, or who are less than 20 weeks into their pregnancy.

Both biological samples (such as blood and urine, samples from the umbilical cord, the placenta, and meconium of the new baby), and environmental samples and information (such as dust, medications, diet, medical history) will be collected. These samples and information will be analyzed to investigate:

(1) How environmental exposures during pregnancy and early life might play a role in the development of an Autism Spectrum Disorder

(2) How genetics may influence risk of Autism Spectrum Disorders – especially how genetic make-up might make certain children more vulnerable to environmental exposures

(3) Whether there are biological markers (for example, things we can easily measure in blood or urine) that will predict whether a baby eventually develops an Autism Spectrum Disorder

(4) How the behavior of newborn siblings of children with an Autism Spectrum Disorder changes over time and what behaviors might be early signs of an Autism Spectrum Disorder

Dr. Craig Newschaffer, a department chair at the Drexel University School of Public Health in Philadelphia, is the principal investigator for the study across all sites nationwide.  It is my hope that with the brilliant team of researchers and staff working on The EARLI Study, the incredible families that participate in the study, and a little bit of hope, we will one day find the causes for autism… and maybe answer my own personal question about Annie and her brothers.

For more on the EARLI study, see Early Autism Risk Longitudinal Investigation to Expand Epigenetic Studies at autismpeaks.org.

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