The Official Newspaper of the Diocese of Little Rock
Dianna Varady's son was developing like most one-year-olds. He had a vocabulary of five words and was pointing and interacting socially with others. Then at 13 to 14 months old he started regressing.
"We thought he might have a hearing problem," Varady said. At that point, an autism diagnosis had not entered her mind.
"When he first starting showing signs of a delay in speech development, I got on the Internet and starting looking up speech delay in children and a million Web sites popped up talking about autism," she said. "I was not ready to even go there."
After months of tests, a developmental pediatrician diagnosed the toddler with severe developmental delay. Varady and her husband, Steve, then enrolled their 22-month-old son at Francis A. Allen School for Exceptional Children in June 2005. It is located across from Our Lady of the Holy Souls Church in Little Rock, where the Varadys are members.
The Varadys' son is called "John" in this article because the couple requested that his real name be withheld.
 More resources Seeking coverage? |
Eventually Francis Allen therapists sat the Varadys down and told them what they feared was true; their child had autism.
"That was what it took for me to pull my head out of the sand and start looking for anything that might help him."
Varady said she knew little about autism and what she did know was based largely on the autism stereotype in the movie "Rain Man."
She started researching on the Internet and eventually met other parents like herself. She was unable to find a central Arkansas support group for parents of children with autism-spectrum disorders. So in January she and three others founded the nonprofit Arkansas Autistic Children's Support Group, also known as Helping Educate About Autism Recovery (HEAR).
The group invites physicians, researchers and therapists to speak about the latest therapies for autistic children. The free meetings are held at Holy Souls monthly.
"Every meeting is geared toward educating parents and physicians and therapists. It's an open meeting, anybody can come," Varady said, who is also the group's president. "We certainly don't have all the answers, but we have a lot of parents who ... have experience and we can all learn from each other."
HEAR also advocates for state legislation, sponsors workshops and will host a Defeat Autism Now regional conference in Little Rock in September 2007.
According to the National Institute of Neurological Disorders and Stroke, autism is the most common condition in a group of developmental disorders known as autism-spectrum disorders.
Varady said John falls into the mild to moderate range on the spectrum, which runs from mild to disabling. He is sensitive to bright lights, loud noises and touch when it comes to strangers. He does not eat meat, vegetables and most fruits, which requires him to take nutritional supplements. He loves potatoes in any form, but does not touch dark-colored foods.
As for developmental delays, Varady said he has difficulty making eye contact, was slow to talk and has a normal-range vocabulary, but has trouble communicating.
Varady stressed that cognitively John's IQ is consistent with his peers. The problem is the communication barrier.
"He's reading earlier than most kids and that's because of his sort of obsessive compulsive qualities. He is fascinated with letters and numbers," she said.
John receives six hours of therapy each week, three for speech and three occupational. All but one is provided at his school.
Last August, when John turned 3, he was moved into an integrated preschool classroom at Francis Allen, which includes children with and without disabilities to help them learn from each other.
Varady said she has noticed "improved eye contact and an explosion in speech and communication," in John since he started weekly therapy.
"His stranger anxiety has subsided to a great degree," she said. "He can tolerate new experiences, changes in schedule, better now than he did before."
"If you met him you'd probably think he's a really shy little boy," Varady said. "Lately, he works really, really hard to try and communicate to us what his needs and his wants are."
Varady said what many don't understand is that autistic children could easily improve and attend a mainstream school with their peers. Years ago, when little was known about the disorder, children were institutionalized in severe cases. Much has changed since then.
A prognosis has not been given for John because, Varady said, "they just don't know." It all depends on how he responds to therapies.
For parents who have autistic children, Varady stressed there is always hope.
"The brain is an amazing thing. Neuropathways can be built. We don't know what's possible for our children and for adults with autism until we try," she said. "There's always going to be a way to break those barriers."
HEAR recently launched a Web site at http://www.geocities.com/hear_arkansas/. For more information, call (501) 650-2144 or be added to the contact list by e-mailing .
The next HEAR meeting will be Monday, Jan. 8 at Arkansas Children's Hospital. Arkansas Department of Disabilities Services representatives will speak to parents about available services through the state government.
In addition HEAR is sponsoring a daylong workshop Saturday, Jan. 13 for parents. Topics covered include an overview of autism and public school system services. It will be presented by Laura Corby of the Autism Solutions Center in Memphis at the Maumelle Library. For more information or to register, call Dianna Varady at (501) 626-9048 or e-mail her at .
According to the National Institute of Neurological Disorders and Stroke, autism is the most common condition in a group of developmental disorders known as autism spectrum disorders. Autism is characterized by three distinct behaviors: difficulty with social interaction, problems with verbal and nonverbal communication and displaying repetitive behaviors or having narrow obsessive interests. Scientists aren't sure what causes autism, but many suspect both genetics and environment are factors. For additional information and overview, go to the U.S. Department of Health and Human Services' Web site: http://www.hhs.gov/autism/#ovr
Current studies from the Centers for Disease Control and Prevention have found that 1 in 166 children in the United States have an autism-spectrum disorder. For more statistics, go to the Web site: http://www.cdc.gov/ncbddd/autism/asd_common.htm.
Dianna Varady also recommended the following helpful Web sites:
Dianna Varady, president of Helping Educate about Autism Recovery, said she and other parents with autistic children are working to educate Arkansas legislators about the need to mandate private insurance coverage for autism spectrum disorders and to get additional therapies covered by Medicaid.
"Right now autism is considered a mental illness and isn't covered by most insurance policies," Varady said. "Nothing, not even a doctor's visit, is covered if it's considered autism."
The group is also working to get Applied Behavioral Analysis therapy paid for by Tefra, a provision of the Tax Equity Responsibility Act of 1982, which allows states to extend Medicaid coverage program for children with developmental disabilities. For more information, go to the Web site: http://www.medicaid.state.ar.us/InternetSolution/General/programs/tefra/tefra.aspx.
Varady said what's being done for children with autism is "just not enough."
Varady said the state has not been tracking how many children are diagnosed with autism each year. All that is available are numbers from the U.S. Department of Education through the Individuals with Disabilities Education Improvement Act of 2004.
Any child that receives therapies or services through the public school system would be tracked in Arkansas through IDEA, she said. But this excludes children not receiving these services.
"According to IDEA in 2003 there were 1,114 children with autism in Arkansas between the ages of 3 and 21," she said.
In promoting ABA therapy, Varady said the group hopes "the state will see that in providing early intensive therapies for children, they can improve outcome for the kids and improve their chances of being able to go on to a regular school," she said.
Studies show that 50 percent of children who receive one-on-one ABA therapy 30 hours a week "go onto mainstream, without any further assistance," Varady said.
The University of Arkansas for Medical Sciences has the only Little Rock clinic that offers ABA therapy and the waiting list is nine months to a year, she said. And since insurance does not cover ABA therapy, only families that can pay out of pocket have access to it.
Varady and her husband, Steve, have a three-year-old son who has mild to moderate autism. The couple has Tefra coverage for their son's six hours of speech and occupational therapies each week and hopes to add ABA therapy to his regimen.
Please read our Comments Policy before posting.
Article comments powered by Disqus
Winning directory photo honors Our Lady of Guadalupe
St. Paul says: How does the Bible define love?
6 steps to getting married in Diocese of Little Rock
Most frequently asked questions on Catholic marriage
St. Joseph a model of solidarity with immigrants
Two gifts after Jesus’ death: Virgin Mary and Eucharist
Why we have an altar, and not just a communion table
Pope: Wars should be resolved through nonviolence
Living relationship with Jesus Christ in the Eucharist
