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Family-centered Care Featured at National Conference

Guest post by Amy Hess, Autism Treatment Network Site Coordinator for Nationwide Children’s Hospital, Columbus, Ohio

Come to Ohio in August!

Autism Speaks’ upcoming national family conference, Treating the Whole Person with Autism: Providing Comprehensive Care for Children and Adolescents with ASD, is an amazing opportunity for families to interact with leading physicians and clinicians from around the world. At the heart of this conference is family-centered care, an approach that I urge all families to pursue.

Like many of you, I am the parent of a child with autism. I am motivated on a daily basis to ensure that my son, Henry, is getting the best educational and behavioral options available. And like many of you, I often feel overwhelmed by the work that goes into requesting and designing customized options for my son. Parents and families are the hub of the day-to-day life of a child on the spectrum. We hire staff. We research medication options. We evaluate programs to find the best fit, and we rely on medical staff to keep our kids healthy.

Henry’s healthcare team has grown exponentially this year, mainly due to medication issues that we never anticipated. To tackle this rough time in his life, I became well versed in family-centered care. This approach keeps our family in the center of all decision making and has allowed me to build a team of physicians and clinicians around us. We created “Team Henry,” which includes Henry’s well-care pediatrician, a developmental behavioral pediatrician and specialists in psychology, education, speech, occupational therapy and even researchers. Yes, even researchers have become a part of our team.  I have found that accessing research professionals can help answer questions, offer options to possible treatments through current trials and provide additional reading on topics of interest.

Family-centered care works for my family because it provides an opportunity for Henry’s professionals from medicine, behavior and education to communicate. This has allowed us to address issues with Henry quickly. Two recent issues we tackled included why he seems to find joy in running in the halls while singing show tunes (which turns out to be one of his ways of dealing with boredom and socializing with classmates) and his frequent jaw movements. Using family-centered care and access to Team Henry, we collected information and made decisions to address both issues quickly and efficiently.

I’m so excited about the upcoming national conference because it will be all about family-centered care. It will feature sessions educating families and physicians on topics such as sleep, gastrointestinal (GI) problems, and other medical conditions that are common in individuals on the autism spectrum. This will include in-depth discussion of medications for autism and related behavioral and medical conditions – such an important topic for shared doctor-parent decision making.

There is even a session on how to put all of this together, which I will help present.  I plan to use my life examples, the good, the bad and the positive!

So come to Columbus, Ohio, August 3 and 4, and learn about family-centered care and how you can make your child’s life better!  

For more on Autism Speaks first national conference for families and professionals, including information on registration and travel scholarships, please see our conference news page.

Watch a message from Dan Coury, M.D., medical director for Autism Speaks Autism Treatment Network, about the upcoming National Conference: