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Thanks to grant, research goes on for autism

by Dawn Brazell
Public Relations
The award of a four-year, $2.3 million grant from the Centers for Disease Control and Prevention (CDC) means important autism and disability research can continue, and it helps MUSC keep its forward momentum in developing a centralized treatment center for children with autism spectrum disorders.
Drs. Jane Charles, left, and Laura Carpenter, pose in the Rutledge Tower waiting room designed for their pediatric patients.

Jane Charles, M.D., MUSC developmental pediatrician and co-principal investigator, said they have a fantastic team that’s been assembled, and they’re excited to be able to continue the research that originally began with a grant received in 2000. The records-based survey project will continue to identify and evaluate changes in the number of children with autism spectrum disorders (ASD) and other developmental disabilities in South Carolina.

Charles said the data collected helps researchers better pin down how much autism is increasing regardless of better rates of detection and diagnosis.
“From the earlier South Carolina study (2002-2006), ASD prevalence increased by 43 percent,” said Charles. “Our study confirms that autism is an urgent public health concern. The renewal of our study will continue to raise awareness, help guide policy and funding, and push science toward discovering causes and better treatment.”
CDC has awarded a total of $5 million per year to 11 sites in Alabama, Arizona, Arkansas, Colorado, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah and Wisconsin. These sites participate in the Autism and Developmental Disabilities Monitoring (ADDM) Network to provide comparable, population-based estimates of the number of 8-year-old children with ASD and other developmental disabilities in different locations over time.
South Carolina ADDM also applied for and was granted supplemental funding, along with Missouri and Utah, to monitor ASD and other developmental disabilities in children who are four years of age. The cooperative agreement with CDC began June 1 and continues for four years. Along with Charles, members of the MUSC ADDM team include Joyce Nicholas, Ph.D. , Laura Carpenter, Ph.D., Lydia King, Ph.D., Walter Jenner, Suzanne Morton Kuker, Amy Burrell and John Redant.
It is estimated that autism affects one in 110 children. The rates for boys are even worse, an estimated one in 70. Charles said the data helps to underscore the need for more education, research and treatment.
“What I’m more concerned about is making the health professional aware of picking up on it earlier because if it’s one in 70 boys, you’re going to have a lot of kids in your practice who need to be screened.”
The American Academy of Pediatrics has a screening protocol that more physicians are starting to use. It’s a trend she and Carpenter, a licensed clinical psychologist in developmental pediatrics at MUSC, are glad to see.
Charles said she’s found that parents have good instincts that something may be wrong with their child, but that pediatricians don’t always take them seriously for fear of referring a child needlessly.
“Go ahead and make a referral at 15 months if they’re not talking. If by the time they get in and have the evaluation, they’re talking, that’s a good thing. Everyone can be happy. Go ahead and have a low threshold for getting a referral to an early intervention program or speech therapy.”
Carpenter agrees. She said some professionals are afraid to alarm parents.
“We’d rather err on the side of caution and be able to pick up those kids who are truly in the need of intervention and get that for them as soon as possible,” said Carpenter. “There’s good evidence to suggest that the brain is more plastic early in development so we believe that by providing very early, intensive intervention you can actually change the trajectory and outcome for these kids.”
Their goal is to try to get children diagnosed by 16 months of age. The state average now is 60 months.
Charles and Carpenter said they used to mainly have parents bring in children because of concerns about motor delays, but now they have parents noticing social and communication issues as well.
This is a good trend, said Charles. “Five years ago, no one said ‘Mom is concerned about play skills.’ Now we have parents coming in saying that.”
There also are more children coming in for treatment as the definition of autism has changed to include a broader spectrum. Given changes being made in the DSM V or Diagnostic and Statistical Manual of Mental Disorders by the American Psychiatric Association, the category of autism will expand to include children with Asperger’s Disorder and PDD-NOS or pervasive developmental disorder not otherwise specified. Charles said she sees it as a good change since formerly only people classified as having autistic disorder were eligible for service.
“People on the other parts of the spectrum have the same needs. We certainly have seen kids with Asperger’s Disorder who were severely impaired compared to people with moderate mental retardation in autism who are just fine and plowing along—able to get along in the world.”
Charles and her team want to do more training for medical students, residents and physical and occupational therapist to better help these children. They also want to do more community education and advocacy for services.
“When the surge of children first came in the ‘90s, the parents took the school district by storm and insisted on having appropriate services. The parents became really strong advocates. Now these kids are graduating from high school and there’s no place for them to go. There are no jobs for them, and there are not the resources and the support—job training and group homes.”
Carpenter said it’s a mounting tsunami of children who are about to become adults, and one goal is to figure out ways to be better prepared. MUSC’s and other health institutions’ monitoring projects, such as the CDC study, will give important data needed to know who these children are and how services should be allocated.
Another benefit of the CDC grant is how it is generating interest in other research projects that are examining how autism is diagnosed and treated. Charles said they hope to works with psychiatry on a medication study, and that Carpenter is finishing a study examining dietary interventions.
Another goal is for MUSC to become a site of the Autism Treatment Network, a national network of universities and medical centers working to come up with treatment guidelines for the medical management of children and adolescents with autism spectrum disorders. Carpenter said they are in the process of applying.
They are working to centralize all the data from the various sub-specialty areas that these children often need, including developmental pediatrics, sleep medicine, psychology, genetics and neurology. That data will go into the network to help develop treatment guidelines, said Carpenter.
“The other thing on the horizon is that we hope to partner with psychiatry to come up with a large autism treatment and assessment center at MUSC that would integrate psychology and genetic care and development pediatrics so folks could get one-stop shopping in terms of treatment and medical management services. A big arm of that would be education for students as well as people in the community.”

The Catalyst Online is published weekly by the MUSC Office of Public Relations for the faculty, employees and students of the Medical University of South Carolina. The Catalyst Online editor, Kim Draughn, can be reached at 792-4107 or by email, Editorial copy can be submitted to The Catalyst Online and to The Catalyst in print by fax, 792-6723, or by email to To place an ad in The Catalyst hardcopy, call Island Publications at 849-1778, ext. 201.