Connecting the dots: UVA takes part in a nationwide autism study

C-VILLE KIDS

  • 1 COMMENTS
Ann Lawrence Grasty says her son, Pierce, is more verbal than some kids on the autistic spectrum and she hopes the study might improve upon those skills. Photo: Elli Williams Ann Lawrence Grasty says her son, Pierce, is more verbal than some kids on the autistic spectrum and she hopes the study might improve upon those skills. Photo: Elli Williams

Eight local autistic children are participating in a nationwide study that could change the way developmental disorders are perceived and treated. Most existing autism medications only treat the irritability and aggressive aspects of the disorder, and for the first time, doctors are testing a drug that could improve social interaction and communication skills.

ConnectMe is a clinical research program for children ages 6 to 12 who have autism, Asperger’s, or Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). It evaluates the safety, tolerability, and effectiveness of memantine, a Food and Drug Administration-approved treatment for Alzheimer’s. The University of Virginia Child and Family Psychiatry Clinic is among nationwide clinics participating in the trial.

“In the Alzheimer’s population they saw that it improved social and interpersonal skills,” said Clinical Research Coordinator Leigh Gayle. “It’s really the first medication of its kind out there, which is pretty cool.”

The trial is in the second of four stages. The first stage screened the drug for safety in a small number of patients, and now a larger population—about 1,000 children—are participating to determine the medication’s effectiveness. Children in this step are observed for about 50 weeks, and scored regularly on their social and communicative skills. Parents fill out a questionnaire at the beginning, middle, and end of the process, and rate their children on confidence, coordination, attention span, repetition, frustrations, personal hygiene, and willingness to join activities.

Ann Lawrence Grasty’s kindergarten-aged son was diagnosed with autism at 3, and recently joined the ConnectMe study through UVA. She describes her son as being more verbal than some children on the autistic spectrum, and said she hopes the memantine, in combination with regular ABA* therapy, will improve his communication skills and ability to listen and respond.

“I don’t expect this to change his behavior per se,” she said. “But I hope that if we continue to do things to improve his communication skills, he’ll be more and more likely to use his words to express his feelings, frustrations.”

With autism becoming more prevalent around the globe and affecting as many as one in 50 kids in U.S. schools, according to the latest numbers from the Centers for Disease Control and Prevention, this use of memantine could change the scope of the disorder.

Emily Callahan, director of outpatient services at the Virginia Institute of Autism in Charlottesville, works with kids ages 5 to 17 on basic social skills, like how to respond politely to disagreement, interact and play with peers, and respond appropriately to public situations out of their control, like being bumped into in a grocery store.

“The core deficit of autism is that social piece, and it’s often the most difficult to address,” Callahan said. “This treatment has the implications for addressing those skills, which are often more difficult to teach but extremely beneficial to them.”

Callahan also works with parents and siblings of children on the autistic spectrum, and said she often sees kids get frustrated when their autistic brother or sister doesn’t respond to a hug, or make an effort to engage or play with the family.

“If it does turn out that this medicine is able to improve some of those behaviors, it could mean better relationships between the child and their siblings, and between the child and their parents,” Callahan said.

 

*A previous version of this story incorrectly identified the therapy as “ADA.” 

  • Gigi

    Many thanks C-ville for raising awareness not only of the autism spectrum but also of Virginia Institute of Autism, a phenomenal resource for families, educators, etc. Kudos to UVa for choosing to be part of the puzzle.

Comment Policy