At the Arkansas Children’s Hospital (ACH), Richard E. Frye, MD, PhD, wears two hats. He is director of the Autism Research Program and the ACH Autism Multispecialty Clinic.
“One of my goals is to integrate clinical and research programs to improve the ability to discover treatment and disseminate new information into clinical practice,” Frye said. “We have integrated our program very well. The clinic is multi-specialty where multiple specialists see children. Children with autism have problems in a number areas that require a number of specialists like neurologists, geneticists, GI specialists and nutritionists that we have in the clinic. We know these are areas that affect autistic children a great deal. They are often affected by neurological disorders, in particular seizures. Some have genetic problems, and many have metabolic problems, which are the way cells generate energy and get rid of waste. We also know they have a high rate of GI complaints.”
Autism spectrum disorder (ASD) was first described as a unique disorder in the 1940s. In the 1970s and 1980s, it was estimated that only one in 2,000 children had autism, but today the Centers for Disease Control and Prevention estimate one in 68 children aged eight years old in the U.S. have ASD. Between 1993 and 2003, the number of children with autism diagnoses increased by more than 800 percent.
Early childhood intensive behavior intervention is the gold standard. But most children don’t have access to the services they need.
“This is one of the things we are trying to help with,” Frye said. “One of the problems is the expense. The gold standard for treatment is for each child to have 40 hours a week of individual behavioral therapy. That is a full-time person. You can think of the economic and practical limitations of that. So, what we are trying to do is find out, what are the physiological blocks? How can we fix those so the child gets the most out of the therapy? If we can do that, the therapy won’t be as long and intensive so we can give it to more children.”
It isn’t known what causes ASD or why rates of it are increasing. There has been speculation that it is related to better diagnosis than in the past.
“But studies have suggested that better diagnosis is only part of the answer and there seems to be some real increases in the rates of autism – not just better surveillance,” Frye said. “The reason why it is increasing so quickly, we don’t know. Each time it is surveyed, usually every four years, we think it has reached its highest levels. But each time we look, it increases higher. It is very concerning that we don’t know what is driving it. More research needs to be done to figure that out so we can provide good treatment.”
One advantage of children getting treatment at the ACH Autism Multispecialty Clinic is that they can take advantage of the latest clinical trials. This allows the child to get the benefit of the latest promising treatments. One trial just completed by Frye involved supplementation with a special type of folate that improves folate metabolism. Children with autism have abnormalities in how they use and handle folate.
“Folate is an extremely important vitamin,” Frye said. “The clinical trial with this special type of folate looks very promising. Some children are having an extremely good response. We are publishing the results of the trial, and are working on launching a large, multi-center trial so everyone in the country can benefit. This is a great example of how we integrate our clinical program and translational program to look for cutting-edge treatment.”
Patients at the clinic are also able to take advantage of industry sponsored trials.
Another research area Frye is involved with is basic research into mitochondria, the powerhouse of cells that function abnormally in many children with autism.
“This can help complement treatment and improve treatment for children with autism,” he said.
Frye, a pediatric neurologist, did a fellowship in behavioral neurology and learning disabilities at Boston Children’s Hospital. He was originally interested in dyslexia. But he started getting a lot of ASD referrals from colleagues who found the autistic children difficult to treat. That led to him creating the autism clinic.
“A lot of it was driven by parents and their quest for knowledge,” Frye said. “Parents who came to my clinic with children with autism seemed to think something was going on with their children that people weren’t telling them about. The level of treatment wasn’t satisfactory to a lot of parents.
“Since autism falls under the behavior neurology umbrella, parents were referred to me. I became interested in certain types of epilepsies that look like autism. I knew I could do an EEG, and look for special types of epilepsy. As I started to see more children with autism, I found out other things were affecting children with autism like mitochondrial diseases. That was something I could test for. I learned that abnormal tetrahydrobiopterin (BH4) levels are found in some children with autism. Folate abnormalities are also common.”
Initially, it was thought that one thing was causing autism. But Frye said it now appears six or more things cause autism or make autism worse. All those factors complicate autism, but understanding all the factors holds out hope for improvement.
Prior to beginning his medical career, Frye worked doing smell and taste research. He met doctors and medical students, and got attracted to the idea of going into medicine.
“At that time, I had no idea how difficult it is to actually get into medical school,” he said. “But I was lucky. I got in my first time.”
In his free time, Frye loves spending time with his family traveling, hiking and biking.
He and his wife, Cara, have two children – Mairin is five and Quinn is three months old. Frye is particularly fond of the River Trail and Pinnacle Mountain in Little Rock, and takes in the exercise and great views several times a week.
For more information about Autism and the Autism Research and Clinical Program at Arkansas Children’s Hospital go to www.arkansasautismalliance.org