Still learning about autism

By Amy Kelly

Autism is an extremely frustrating disorder. There is no known cause, no known cure, and no precise treatment once it's diagnosed. That's why the national symbol of autism is a puzzle piece: It truly is a puzzle.

As a mother of three - two typical boys, who are 6 and 9 years old, and a daughter with autism, who is 8 - I live with autism's torturous puzzle every day. Not that there aren't as many rewards as there are frustrations, but when you live with autism, you live with the unknown and the uncontrollable. It is a great lesson in patience and surrendering.

When my daughter, Annie, was diagnosed with classic autism the day before she turned 2, and three weeks before I gave birth to my youngest child, Ryan, my world changed instantly. My daughter was not who I thought she was or envisioned she would be. I had to literally mourn dreams for Annie that may never come: prom, graduation from college, a wedding, and the birth of her own children. And I had to have new dreams: of nights of restful sleep, of Annie's not crying all the time, of actually hearing Annie's voice.

Annie now attends a special school for kids with autism. Before she turned 5 and was able to attend the school, she saw 15 different therapists for a total of 38 hours a week, every day but Sunday. I had to juggle all this while trying to provide a sense of normalcy for Annie's brothers.

At a time in my life when things felt out of control, I decided I needed something that would make me feel as if I had just an ounce of control. So I began to raise funds for autism. I successfully raised nearly $100,000 for the cause, which was very rewarding and a lot of work.

Now I have taken my contribution to the cause a step further as the community outreach coordinator for Drexel University's Early Autism Risk Longitudinal Investigation, or EARLI. This is a groundbreaking, national, real-time study of the potential causes of autism, both genetic and environmental.

I work with the families of children with autism as well as their care providers. My primary role is to let people know about the study and find families that are willing and eligible to participate.

The EARLI study is recruiting women who already have a child on the autism spectrum and are less than 20 weeks pregnant with a subsequent child. The study tracks these mothers and their children from gestation until the children's third birthday. It examines everything from biological samples (hair, blood, urine) to environmental influences (dust, medications, lifestyle, etc.). Over the course of the next eight years, the study's researchers hope to be able to shed more light on the causes of autism.

Being involved with such research, and working with some of the best scientists and doctors in the autism field, is exciting for me. My life, which was transformed in a matter of minutes with three words - "She has autism" - has never had a mission as mighty as this: contributing to the effort to discover the cause of this all-too-common disorder.