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Thanks to grant, research goes on for autism
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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.”
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