A new study about autism contains sobering news that, as the parent of a child on the autism spectrum, I need to know. Many autistic individuals also have treatment-resistant epilepsy, the study notes. While my son Charlie does not (as far as we know) epilepsy, he has been taking an anti-seizure medication for the past year and it seems to be helping him quite a bit.
Researchers looked at the medical records of 127 children and adults aged 3 to 49 with autism who had had one or more seizures. The patients had been referred to the NYU Comprehensive Epilepsy Center in New York City over a 20-year period because they had also been diagnosed with epilepsy or it was suspected they might have epilepsy, said study lead author Dr. Orrin Devinsky.
About 34 percent of the patients were found to have treatment-resistant epilepsy, meaning their seizures continued despite medications. A few also underwent surgery — vagus nerve stimulation, in which an electrical device is implanted to stimulate a nerve that runs near the carotid artery of the neck.
Another 28 percent were seizure-free after treatment.
For the other 39 percent of patients, researchers didn’t have enough information to determine if their seizures were treatment-resistant or not.
“This highlights that epilepsy is common in autism, and in a large percentage of cases, the epilepsy is treatment-resistant,” said Devinksy, a professor of neurology, neurosurgery and psychiatry at NYU Langone School of Medicine and director of the NYU Comprehensive Epilepsy Center.
Dr. Devinsky also says that “Recurrent seizures can injure the brain, can cause structural damage to the brain and can be deadly over time.” Seizures can cause breathing problems and interfere with brain function and heart rhythms.
I also found some of the study’s other findings about the time of onset of seizures in autistic children to be of interest. The study found that the average age of the first seizure was 8, though medical records suggest that those with treatment-resistant epilepsy tended to have seizures starting earlier in childhood (when they were about 6) than those whose epilepsy responded to treatment (whose seizures started when they were about 11).
My son has not had seizures per se but, when he turned 11 (and entered puberty), the behavior issues (including head-banging) that have recurred throughout his life became much more intense. Some of this was due to his growing several inches very quickly and hormonal changes, but my husband Jim and I never can never outrule possible underlying medical issues. Currently we have an excellent neurologist for Charlie (with a wonderful, insightful staff including a psychiatric nurse), though we always have concerns.
Dr Devinsky and other experts have suggested that all autistic children ought to be screened for epilepsy and also note that:
Autistic children with epilepsy also tended to be more impaired than those without epilepsy. About 54 percent of those with treatment-resistant epilepsy had motor skills delays, compared to 35 percent of those with treatable epilepsy. Also, those with treatment-resistant epilepsy had more language delays (72 percent versus 65 percent), and were somewhat more likely to experience development regression, the study suggested.
We can’t of course attribute many of what I’ve called Charlie’s behavior storms to undiagnosed epilepsy. Still, it often just seems very much the case that some kind of disrupted neurological activity (if that is an accurate way to put it) is going on for Charlie in the midst of some of his “episodes.”
As Charlie is minimally verbal and does not communicate his internal physical state to us in words, it’s really difficult to figure out how a medication is affecting him, as well as for him to tell us how his head, stomach, etc., feel. It is mostly through careful and constant observation of Charlie and his behavior that we get clues to what might be going on with his health. While studies like the one described here provide no definitive answers, they do give us more clues about what might be going on with Charlie’s health, and we need these to help him live the best life possible.
Photo of a someone getting an EEG by MousyBoyWithGlasses