What is the Relationship Between Epilepsy and Autism?

You’ve likely heard of epilepsy, but may not realize that it’s one of the most common conditions affecting the brain. The CDC states, “About 3.4 million people in the United States have active epilepsy…A person is diagnosed with epilepsy when they have had two or more seizures.”

While epilepsy can be caused by a brain tumor, traumatic brain injury or a stroke, the cause isn’t always known. Any person can develop epilepsy, and if it occurs within your family, it’s more likely that you, or a family member, could develop it.

Epilepsy is more common in people with autism

For people with autism, epilepsy is more common. PLOS One, a science and medical journal, published a study of nearly 6,000 children with ASD. The article states, “The average prevalence of epilepsy in children with ASD 2-17 years was 12.5%; among children aged 13 years and older, 26% had epilepsy.” For families with epilepsy, autism is also more likely to occur. While autism doesn’t cause epilepsy and vice versa, Autistica states, “Scientists believe epilepsy and autism are related because they have found genes linked to both disorders.”

When Harriet Herndon’s son Ravi was 15, he had a seizure at school. He dropped to the floor, stopped breathing, and started to turn blue. His teacher called an ambulance. After a trip to the ER and seeing several neurologists, he was diagnosed with epilepsy. Ravi has autism and is a non-vocal communicator.

“I thought he was in the clear, but I didn’t realize epilepsy also manifests during adolescence because their brains are changing so quickly,” says Harriet.

Most people probably think of an epileptic seizure resembling what Ravi experienced. But not all seizures look like this. Mayo Clinic says, “Seizure signs and symptoms may include temporary confusion, a staring spell, stiff muscles, uncontrollable jerking movements of the arms and legs, loss of consciousness or awareness [and] psychological symptoms such as fear, anxiety or déjà vu.”

Getting an epilepsy diagnosis can be more complex

While Ravi was diagnosed pretty quickly, getting an epilepsy diagnosis for a person with autism can be more complex. Autistica states, “Diagnosing epilepsy in autistic people is complicated because stereotyped movements common to autism can be mistaken for epileptic seizures.” People with autism may do repetitive movements, known as stimming. Since these movements can be unusual in appearance, some people may mistake these for seizures.

Additionally, some people with autism are non-vocal communicators, like Ravi, so communicating the epileptic symptoms they’re experiencing might be more difficult.

Sensory processing differences are also common in people with autism. They may find loud noises, bright lights, strong smells, crowds or other sensory input completely overwhelming. That can also complicate pursuing tests for epilepsy. Autistica states, “Autistic people might have difficulty tolerating tests for epilepsy, such as brain scans.” During a brain scan or electroencephalogram (EEG), electrodes are attached to the scalp with a glue-like substance. If an individual has tactile sensitivities, Fraser Sensory Supports and Training Manager Gina Gibson says, they may become distressed or be unable to tolerate the sensation, whether it’s from the feeling of the glue on their scalp during the test, or the glue that lingers after the test is complete.

Some sensory differences can cause seizures

Sensory processing differences may also be triggers for an epileptic seizure. For example, Harriet remembers seeing a sign at school that said, “Please don’t slam door. It causes seizures.” For that child, loud noises were a seizure trigger.

Harriet says not getting enough sleep is a trigger for Ravi. So she’s careful to ensure he gets a full night’s sleep.

There are ways to decrease or stop seizures

Ravi is 20 now and hasn’t had a seizure for some time. He takes medication to prevent seizures, but finding the right drug and dose took time.

“It’s tough while they’re growing too. They might outgrow their dose of medication, and you don’t know until they have another seizure,” Harriet says.

Ravi Herndon enjoying a meal out.

Ravi also carries rescue medication, in the form of a nasal spray, to stop a seizure, if needed. If a seizure goes on for too long, it can cause brain damage.

Some people also try a special diet, like the Keto diet, to control epilepsy. However, some kids with autism are already picky eaters, so an overly restrictive diet may not be possible for them. Before beginning any specialized diets, it’s also recommended you discuss it with your doctor. The Keto diet can have some negative side effects, so you’d want to weigh the benefits and risks with your doctor.

For more extreme situations, surgery is also an option. The CDC also suggests that people can better manage their epilepsy through regular exercise, lowering stress, checking with their doctor before taking new medications or supplements and eating a well-balanced diet.