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James Kenneally is a prolific artist. He frequently shows his work in Schenectady, N.Y., where he lives and, in 2005, was chosen as the New York Governor’s Guest Artist. He presented the governor with an original painting of the executive mansion at the reception celebrating the award. James, who is now 37, also has both autism and epilepsy.

James’ mother, Mary Ann Kenneally, knew that children with autism or autism spectrum disorder (ASD) are at higher risk for seizures than other children, but she thought they were home free when James passed through his teenage years without incident. Then, at the age of 21, while on a school camping trip, James had a generalized tonic-clonic seizure.

Initial evaluations by a neurologist appeared normal, but within two weeks, James had a second seizure. His seizures, always generalized tonic-clonic seizures, continued for 9 years until his doctors added a relatively new medication at the time, called Zonegran (zonisamide), to his existing regimen of Lamictal (Lamotrigine) and Tegretol (carbamazepine).

James’ dual diagnosis of autism and epilepsy is not unusual. Dr. Sarah Spence, a clinician and researcher at the National Institutes of Mental Health in Bethesda, who studies the co-occurrence of the disorders, estimates that 20-25 percent of individuals with ASD have seizures, though pinpointing the exact number is difficult. One problem investigators face when trying to determine the true frequency of the co-occurrence is that both disorders are very heterogeneous –– and adding them together makes their presentation even more varied. “You don’t see one type of epilepsy in autism, or one age of onset, or one severity, or one type of seizure,” Spence said. “Some individuals have intractable epilepsy, while others have only two seizures in their lifetime.”

Scientists don’t understand why the two disorders occur together so frequently. A key question is whether one causes the other. In some rare situations that does appear to be the case. For example, children who have infantile spasms are very likely to develop ASD if the seizures and abnormal electrical activity in the brain are not treated effectively.

Peyton Hilton was just 7 months old when he started having seizures and within a year, he underwent a partial hemispherectomy to stop what had become a daily occurrence. His mother, Chris Hilton, considers the surgery a success. Peyton, now 11, still takes antiseizure medications and has a seizure every couple of months. “Our doctors could never tell us if his seizures and surgery caused the autism,” Hilton said. “But I think he would have been on a very different, limiting path if they hadn’t been able to stop the seizures with the surgery,” she said, proudly pointing out that he is now in 4th grade and reading at a 1st grade level.

In the case of infantile spasms, the damage may come from the abnormal brain activity. “The background EEG pattern that goes with those seizures is a very chaotic high voltage, with nothing normal looking about it,” Dr. Spence said. “If your brain is supposed to be working on regular electrical activity and you don’t have it, we wonder how you can take in information or how can you effectively learn things early in life?”

That question may be relevant for a substantial proportion of the autistic population because several studies suggest that as many as half of all children with autism or ASD have seizure-like EEG patterns –– even though they don’t show outward signs of a seizure. “I wonder if that activity, early in life, is contributing to the difficulty with communication and socialization in children with autism, and with their aberrant behaviors,” Dr. Spence said.

“This is now a big controversy with neurologists and epileptologists,” says Andres M. Kanner, M.D., professor of neurological sciences at Rush Medical College in Chicago and a member of the Epilepsy Foundation Professional Advisory Board. “Some researchers say that the epileptiform activity could be contributing ASD symptoms, while others think it is an epi-phenomenon, that doesn’t have a clinical impact.” In fact, some physicians will try putting a child with ASD and abnormal EEG patterns, but not seizures, on an antiepileptic drug for three months to see if their cognition and behavior improves. If the drugs help, they continue the therapy. If not, then they take the child off it. But thus far the clinical evidence for such an approach is limited. “Randomized controlled trials need to be done,” Dr. Kanner says. “Currently there is no evidence of antiepilepsy medications really demonstrating improvements of autism symptoms in controlled studies.”

Although the high frequency of seizures in individuals with ASD has been recognized by professionals since the first description of autism in the 1940s, many parents only learn of the co-occurrence when it happens to their own child. “I didn’t know what autism was until I went to a medical seminar to learn more about epilepsy,” said Kelly Snider of Eau Claire, Wisc., whose 15-year old son Jacob has both autism and epilepsy. “They also talked about autism and I thought Jacob did a lot of the things they described, like flapping his arms when running and not making good eye contact.” Jacob had been having seizures since he was an infant, but it was only when he was 9 years old that they started formal testing for autism. At first she said, the family tried to shoulder all of the concern on their own, but now she is very involved with both her local Epilepsy Foundation and with the autism group. “I have leaned a lot on family and friends, and I have learned that you really have to reach out and use resources in the community as well to get through this,” she said.

One reason that the co-occurrence of epilepsy and autism is not well known among parents and not well understood by researchers is that the two disorders have traditionally fallen under two different medical domains. Psychiatrists and behavioral specialists have carried the day in autism, while neurologists and epileptologists have focused on epilepsy and seizure activity. “Those fields have been divided for over 50 years and are only now coming together again in terms of diagnosis and treatment strategies,” says Dr. Jay Salpekar, associate professor of psychiatry and pediatrics at George Washington University School of Medicine, in Washington, D.C. and Epilepsy Foundation Professional Advisory Board member. “Very few clinicians know both.”

He sees a substantial number of patients who have both disorders and his choice of treatments for them is based on their individual symptoms and behavioral issues. “Nothing about ASD makes me pick one antiepileptic drug or another,” Dr. Salpekar says, noting that most individuals with ASD don’t require psychiatric medication. “But if I look at specific behaviors, such as impulse control problems or spontaneous aggression, those may be better treated by an antiepileptic drug that has a solid track record of treatment for mood disorders,” Dr. Salpekar said.

The impact that antiepileptic drugs might have on the symptoms of ASD is still unclear. An old theory is that controlling seizures would worsen behavior problems, as if the abnormal electrical activity that was no longer being released by seizures had to escape in some other way.

More recently, some clinicians have started to suspect that controlling seizures may mitigate behavioral issues. That appears to be the case for 13-year-old Emily Craft of Louisville, Ky. Her mother, Monique Craft, says that Emily, who has Asperger’s syndrome and epilepsy, seems to have less anxiety and fewer mood swings when she is on Lamictal, than when she is not taking other antiepileptic drugs. That said, drugs specifically aimed at lessening her anxiety and social issues seemed to make the symptoms worse, so now the family helps her by emotionally supporting her and reassuring her when she starts to get anxious.

Experts agree that there are more questions than answers about why these two disorders frequently occur together. But Chris Hilton says one thing that is clear from talking to the families in her area: Navigating the system to get the complex care and support needed for these individuals requires a lot of work. She has kept track of the professionals the family has consulted for Peyton’s care, and they number more than 100. “Every doctor we’ve had looks at a slice of the overall picture. It is up to me to pull together all the pieces and figure out what to do,” she said. With that as a backdrop, she and other family members emphasize that reaching out to the community is incredibly important.

For James Kenneally, it has now been seven years since his last seizure. And though his mother has relaxed some, she remains wary. “He could still have seizures,” she said. “I’m still aware where he is in the house.”