Home > Government Relations > CAA Success Stories: A ‘Godsend’ for Families in Arkansas

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

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.

  1. June 15, 2011 at 1:28 pm

    I have an autistic grandson, we have been involved with Children’s Hospital this last year. Unfortunately, we have not received the kind of treatment or help that you discribe with these Doctors. One of the reasons may be that this child is terribly fearful of medical settihgs and screams throughout the appointments, but you would think they would be aware of these types of behaviors.

  2. Artie Hosch
    June 15, 2011 at 10:12 pm

    I am in California and sadly can report something similar and my child is not fearful. Point is we need more but in lieu of waiting, I am taking my son’s issues on head on–one on one. Twenty eight months ago he stemmed heavily, little to no eye contact, speech (8) words…today he is vibrant, wants to be a part of everything around him. We triumphed over Kindergarten in “lite” terms but we are working hard this summer to make a lie of all that would be dismissive of his potential. Keep working families, regardless of the help you get in any setting or the lack thereof. Shower our kids with love and hope and therein lies a brighter future. LOL

  3. Rick Kolan
    June 17, 2011 at 12:47 pm

    Wonderful post, Dianna. I am a Program Officer with the Autism Treatment Network, and I would like to mention how proud we are of the work our friends in Arkansas are doing, as well as that of our other ATN sites. I should also clarify that Autism Speaks has provided the core funding to establish and continue the ATN. The CAA has provided a significant funding boost to support ATN activities in the areas of guidline development, research on physical health issues, and improving the quality of care at all of our sites. In addition to the other programs Dianna mentiond, the CAA made available a substantial grant to the ATN through the Health Resources and Services Administration (HRSA). This enabled the ATN to operate as the Autism Intervention Research Network on Physical Health (AIR-P). You can read more about the AIR-P here; http://www.autismspeaks.org/science/resources-programs/air-p.

  4. alsopollyanna
    June 23, 2011 at 9:39 pm

    Ms. DV, TY 4 this Post! I APPRECIATE the info!! I “Like” the opportunity 2 help the cause by finding it so EASY 2 write 2 my Senator & Representative!!! DONE!!!!

  1. No trackbacks yet.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 1,049 other followers

%d bloggers like this: