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CAA Success Stories: A ‘Godsend’ for Families in Arkansas

June 15, 2011 4 comments

Dianna Varady is currently the Statewide Chapter Advocacy Chair for Autism Speaks in Arkansas, advocating for autism research and services at the federal level, as well as leading the grassroots effort that resulted in Arkansas becoming the 24th state to enact autism insurance reform in 2011.  Dianna has a son with autism.

What a difference six years makes.  In July of 2005, my husband and I were in a meeting with our son’s treatment team when we were told very bluntly, “We think you’re dealing with an autism spectrum disorder here.”  Difficult to hear, but exactly what I needed to pull my head out of the sand and get to work.  I wanted answers….how did this happen and what do we do now???

It took us about three days to discover that we had a world-renowned autism researcher right here in Arkansas.  Dr. Jill James at the Arkansas Children’s Hospital Research Institute was studying folate metabolism in children with Down syndrome when she accidently stumbled upon a significantly abnormal metabolic profile in one of her control subjects – a sibling of one of her study subjects who was diagnosed with autism.  Pretty soon she had identified several more children with autism who had the same bizarre profile.

We contacted Dr. James right around the time her study was being published.  At the time, she was presenting her findings to physicians and researchers around the United States and to her colleagues here at Arkansas Children’s Hospital.  Pretty soon we had dozens of physicians and researchers interested in autism.  Here in Arkansas, doctors from many of the specialty clinics were interested in conducting their own research.  We had an abundance of talented and passionate professionals just waiting for an opportunity to put all of their new-found energy and enthusiasm around autism to good use.  Then, in 2006, along came the Combating Autism Act (CAA.)

Thanks to the CAA, Arkansas now has an Autism Treatment Network (ATN) Clinic, where our developmental pediatric teams are identifying children with autism using state-of-the-art evaluation tools and contributing to a nationwide data registry.  The same ATN team also recently held its second annual “Team Up” autism conference for parents, educators, and clinicians to learn from some of the most respected professionals in the field of autism.  We have a Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program at the University of Arkansas for Medical Sciences (UAMS), also funded through the CAA, that provides graduate students in a number of different disciplines the opportunity to work together on a multidisciplinary team.  And, probably most exciting of all, the CAA has funded research here in Arkansas.  An autism prevalence study is underway, and we have studies funded by CAA that are looking at diet, nutrition, physical health and quality of life.

One of the fringe benefits of the programs and studies provided through CAA funding is the way all this activity around autism has brought together a team of specialists at Children’s Hospital to develop an autism clinic with a geneticist, a gastroenterologist, and a neurologist.  These three doctors collaborate with one another to provide top-notch care for their patients, and to improve the overall experience for families in their clinic.  For our family this has been a godsend.  Many of the answers we were seeking in 2005 have been found thanks to these dedicated and compassionate doctors.

Naturally, being an Arkansas native, I’m proud as a peacock of all this activity right here in my back yard.  But the CAA is scheduled to expire September 30, jeopardizing continued federal funding for many of these activites. That’s why it’s CRUCIAL for Congress to move quickly and approve the Combating Autism Reauthorization Act (CARA.)   If not, all of this research and these advancements in the field of autism could disappear.  And so could our hope for a cure.

Dianna Varady (left), with Arkansas Rep. Uvalde Lindsey and Autism Speaks Senior Policy Advisor & Counsel Lorri Unumb following passage of Arkansas insurance reform bill

This legislation must be passed by Congress and signed by President Obama by September 30th, 2011. If you would like to get involved to make sure that happens, please visit www.autismvotes.org/action-cara. Autism Votes makes it easy to participate. Autism Speaks – It’s time for Congress to listen.

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