Should All Autistic Children Be Screened for Epilepsy?

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.

The study is published in the journal Epilepsia‘s May issue. US News and World Report offers this summary:

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

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Nikolina J.
Nikolina J.about a year ago

maybe it helps

Kelly Johnson
Kelly Johnson4 years ago

I myself have epilepsy (Simple partial complex)
Autism a form of Epilepsy I do not know. Have their been multiple studies?

Before spending the mounds of money to determine epilepsy, seeing multiple doctors. Have you thought about looking into supplements that may benefit?

Suzen R.
Suzen R.4 years ago

Autism is a neurological disorder and so is epilepsy.. why not screen for seizures?

Kerrie W.
Kerrie Waldron4 years ago

Old Hat. Defeat Autism Now had established that epilepsy rates for Autistics is approx 30% (that was over 20 years ago).
BTW "seizures" is one of the "side effects" listed on vaccine package inserts.
Connection anyone?

Jon Hoy
Jonjon Hoy4 years ago

I would say yes but who's paying the expenses for this who can't afford healthcare. This could figure a child's learning ability and area of learning and not put them in a class where they have to be stressed and still make the grade. Again it may not be the child, they could be stress from issues at home that affects them this way where their confused. Either way, test and find out. Each child is smart in his or her's own way.

Jackie T.
Jackie Tucker4 years ago

I believe that my autistic son had petit mal seizures when he was younger, and eventually went to grand mal seizures when he hit puberty. I don't agree with the theory of not giving medication to people with epilepsy. I feel that this a dangerous assumption. Sometimes the cause of the seizures is not known, as was the case with my son. The seizures can also cause a lot of damage to the system if they are not treated. I went to several neurologists and none of them could completely stop my son's seizures with medication. I believe that my son's declining condition was caused by the seizures, and not the medication. I stood helplessly by as his condition deteriorated for 12 years, leading to his eventual death. I think testing would be beneficial to children with autism.

KrassiAWAY B.
Krasimira B.4 years ago

Noted with interest.

Audrey A.
AI A.4 years ago

The problem with epilepsy screening is that, if they determine the child has it, the treatment is drugs...and then more drugs to treat the side effects. Then it's a downward spiral that you can't retreat from. It's like borrowing money to pay rent---you'll never get back on top of the mess. Forever in "drug debt". Unless the seizures are severe, it's better to figure out biomedically what's causing the seizures and treat that (without drugs). Unfortunately, that's a hard route because MDs aren't much help, but the drug route is harder in the long run, especially for kids with autism. Go to an ARI conference (formerly DAN). Amazing how much you will learn there. Even the other parents you'll network with are tremendously helpful. So many have been down this road.

Kent Magner
Kent Magner4 years ago

Liberty G - Well put. Many of these chemicals in the environment are indeed estrogen mimickers and endocrine disrupters and no one has any idea how they work in synergy with each other.

Danny W.
Danny Wilson4 years ago

Couldn't hurt.