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Program catches lost children on autism spectrum

There are moments in every mother’s life that she never forgets.
One for Tina Robles was her son Dakota’s eighth birthday. She had sent out invitations to everyone in her son’s class, careful to leave no one out. She never heard from anyone and on the day of the party, no one showed up. Not to be outdone, Robles regrouped.
Tina Robles gives her son, Dakota, a kiss. Visit to help children with autism.
She made Dakota king for the day and took him to his favorite places. They had a great time, she said, but a wistful note hangs in her voice.
Robles is used to handling crises. Her son, like many others on the autism spectrum, is highly intelligent, but has social, emotional and behavioral issues. The lack of understanding by his teachers and peers about his disabilities makes living with the condition very difficult.
“To some degree I block it out or cry or talk to the people at my church,” said Robles. The other thing she does is work as an advocate for MUSC’s Project Rex to raise awareness of the needs of these children and to raise money for resources, such as starting a new school where teachers are trained to make these children feel safe and appreciated. Dakota receives services from Project Rex, a MUSC program for high-functioning children who have traits of autism but who don’t have the full-blown, classic case.
The number of children in this category is much higher than most people think, said Project Rex director Frampton Gwynette, M.D. The Centers for Disease Control and Prevention reports a prevalence rate of 1 out of 110 children having autism. For boys, it’s worse with a prevalence of 1 in 70.
Of the children on the autism spectrum, only 36 percent fall into the autistic category with its severe symptoms. The other children, with conditions such as Asperger’s or Pervasive Developmental Disorder Not Otherwise Specified, fall on the mild end of the spectrum. Their disabilities, though less obvious, can be just as serious, but most services for children on the autism spectrum exist for those with full-blown autism, Gwynette said.
Tired of seeing these children get lost in the shuffle, Frampton and others started Project Rex in 2008.
“At MUSC’s Institute of Psychiatry, we met these children every day, but for a long time we had no treatment options that were custom-made for them. In just two short years, we created a program that provides not only treatment for children on the autism spectrum, but also support and education for their families. We are finding that through Project Rex, children are beginning to maximize their amazing potential.”
These are the children that have their loved ones, teachers and even doctors shaking their heads, puzzling over what they might have because it’s not always clear-cut. Gwynette said this means they often fall through the cracks, which delays the children getting treatment and the family getting support.
“These are intelligent, even gifted children. They are almost always in regular classrooms, and often do quite well academically in the majority of their subjects. Commonly, it is only after the child has major social, behavioral or academic difficulties that they find their way to treatment. By then, these children are often significantly behind or socially isolated from their peers.”
The goal is to continue to expand Project Rex and raise awareness to be able to help more children and families affected by the disorder. In order to raise funds for some of the programs planned, the  MUSC Autism Spectrum Foundation was started in 2009. One of the hopes is to build an autism academy at MUSC, which will require a large philanthropic effort, he said. 
Vanessa Hill, development officer for the Department of Psychiatry & Behavioral Sciences, said that she’s fallen in love with these children, and will do everything she can to find ways to raise money to support their cause. She proudly displays her T-shirt that says “MVP for MUSC—I proudly support children on the Autism Spectrum.” She said the MVP can stand for most valuable player or person. Proceeds from the T-shirts sales, which are promoted during various sporting events, will go to fund everything from research to scholarships for parents who cannot afford counseling.
“We want to be the champions for these children. We want there to be more awareness of what it is and how we can help them,” said Hill. “Every child has the right to grow and develop into the kind of kid that they can be. They can find out that they are not alone, and that they are in this together.”
Nearly all children on the autism spectrum have ADHD or attention deficit hyperactivity disorder and many of them take medication for it, said Gwynette. These children also have significant social and communication deficits, which can result in depression and anxiety. They also may have sensory abnormalities; be picky eaters and picky dressers because clothing textures or tags bother them; have interests that are unusual or extreme; and have rigid thinking. Gwynette said the rigid thinking poses a challenge in that they often lack flexibility. Many of these children are very set in their routine and have an extremely difficult time adapting to the way they play or making transitions in their daily schedules.
Project Rex director Dr. Frampton Gwynette (kneeling) with members of the MUSC Department and Institute of Psychiatry wearing their MVP for MUSC T-shirts in support of children on the autism spectrum.

 “The medical community has now awakened to the crisis and a huge amount of resources are going into finding treatment options,” Gwynette said. “While our patients and families continue to face significant challenges, our goal at Project Rex is that these children will grow up to do what so many other children do: play on sports teams, participate in social activities such as school dances, graduate high school, begin a career and have families of their own some day. These are the dreams we intend to protect.”
Gwynette said there’s a wide range on the autism spectrum where children may fall, which can make detection and early diagnosis difficult. The earlier these children start with treatment, though, the better the chance of success.
“The common thread our patients at Project Rex share is that they have difficulty ‘fitting in.’ We have all been in that situation, but most of us can say ‘I didn’t fit in because I was the new kid or because I dressed differently than everyone else.’ But what if you always felt like the new kid? And what if you could never figure out why you had such a hard time being part of the group at school? This is where our passion at Project Rex comes into play because we don’t want even one child to feel that way any longer.”
That’s a relief for parents such as Robles. She said it’s her dream that these children get the support they need. If it weren’t for Project Rex, she wouldn’t have known about the different resources that were available. Robles said the resources are critical because these children often are beyond their level in so many ways, while being significantly delayed in others. The combination makes them prone to bullying and rejection from their peers, and being reprimanded by teachers who think they are lazy or just need more discipline.
“I just want to see more healing. These kids get so scarred by all the rejection.”
For information about Project Rex, see For ways you can help, visit



Friday, April 16, 2010

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