Autism isn’t an exclusionary disorder. It’s common for autism to coexist with a variety of other health conditions. Epilepsy is one of them.
Researchers aren’t exactly sure why autism and epilepsy often go hand in hand. But they’re quite certain that the two health conditions are connected, and they often appear in both adults and children.
Treatment for epilepsy remains the same, whether you’re an adult or a child. Medications are appropriate after the second seizure, and if those don’t work, experts move to more significant interventions, including surgeries.
If you’ve been diagnosed with both autism and epilepsy, don’t be afraid. You’re not alone, and there are plenty of resources to support you. We’ll connect you with some of those resources at the end of this article.
What Does Epilepsy Look Like?
When we think about epilepsy, we often think about someone shaking on the ground in the throes of a seizure. While some people with epilepsy have large seizures like this, plenty of people don’t.
The Epilepsy Foundation says hallmarks for seizures in people with autism include:
- Staring. The person might look into the distance for long, uncomfortable moments without blinking. Saying the person’s name brings no response.
- Stiffening. The person’s entire body goes rigid for a moment or two, and you might notice a lack of blinking or swallowing.
- Shaking or twitching. You could see all the muscles twitch, or you might spot only one or two body parts moving rapidly.
It might be difficult for families to discern the difference between autism-driven behavior and epilepsy behavior. Someone might jiggle a foot or pulse muscles as a self-soothing mechanism. If the person is nonverbal, questions about motivation go unanswered.
Autism & Epilepsy Are Common
It’s not unusual for people with autism to have epilepsy. Researchers have studied the connection, and they say many people have the two conditions at once.
In 2013, researchers estimated that 12.5% of people had epilepsy. In 2019, researchers estimated that about 10% of people with autism have epilepsy.
These two studies were performed via different methods, but they came to a very similar condition. The results suggest that for many people with autism, epilepsy is a way of life.
Some suggest that the connection is growing stronger over the years. Research done in the 1960s, for example, found a smaller link between the two conditions. But experts explain that autism guidelines have loosened over the years, and that means more people are getting a diagnosis now than they did in the past. With a larger group of people with autism, epilepsy prevalence is bound to rise, they say.
How Is Epilepsy Diagnosed?
Doctors don’t rely on observations in their offices to diagnose autism. Instead, they use a series of tests to understand what’s happening within a patient’s brain cells. These tests are the same whether they’re performed in adults or children.
Doctors may use:
- EEGs. These tests measure electrical activity within the brain. They can be performed in a variety of ways. Some people have tests in the hospital, and some wear monitors at home. Some have testing while awake, and others need tests while they’re sleeping.
- MRIs. These tests detect unusual brain activity.
- Genetic testing. Mutations are associated with autism risk, and some doctors may lean on them to determine whether or not the disease exists.
- Interviews. Some people experience unusual sights, smells, or sounds before a seizure. That information is critical as doctors make a diagnosis.
Seeing a seizure can be scary. The episodes are often quite frightening for people that endure them too. But living through one is not enough for doctors to take action. Often, experts say, doctors want their patients to have two before they offer an intervention. That way, they’re not treating issues that might disappear on their own.
Treatment options include:
- Medications. Drugs can soothe electrical activity within the brain and keep seizures from starting. Most of these drugs come with side effects, experts say, and their efficacy varies from person to person. You might need to experiment until you find one that offers seizure control with side effects you can live with.
- Diet changes. A ketogenic diet, in which meals emphasize fats over proteins or carbohydrates, can control seizures in some patients. In fact, experts say, about a third of children who try this diet stop having seizures altogether.
- Nerve stimulation. Doctors pulse electricity through a pacemaker-like device that attaches to the brain. As long as the device keeps working, the seizures should stop.
- Surgery. Seizures tend to originate from the same portion of the brain. Sometimes, removing that part of the brain also stops seizures.
Each seizure does damage to delicate brain cells. It’s critical to intervene when they appear. You can’t stop epilepsy from starting, but you can help to ensure that it doesn’t worsen with time.
Special Guidelines for Children With Epilepsy
In general, treatments for autism and epilepsy are the same in adults as they are in children. But there are a few minor exceptions.
For example, some children outgrow their epilepsy, and they no longer need to keep taking medications as they age. Experts say parents should never stop giving their children medication without talking to a doctor first. Even if you don’t see problems, they may be lurking below the surface.
Your child should visit their doctor yearly for a medication checkup. Your child might need a higher or lower dose of drugs as they age. Adults may not need such frequent appointments, but children do.
How Families Can Help
Doctors take charge in addressing epilepsy, but there are critical things families can do to help.
You can consider:
- Enrolling in a first-aid course. People may slip, trip, and fall during a seizure. They may need help bandaging cuts and scrapes. If the seizure lasts for a long time, you may need to help them get into a recovery position to avoid choking. You can learn these skills in a first-aid class. Some families report that it’s a helpful step in managing epilepsy.
- Enhancing communication. Ensure that the person with autism knows how to tell you about an impending seizure. Some can use their words, but others might need picture books or other assistive technology. Their alerts can help you prepare, so you can keep them safe.
- Keeping others informed. Ensure that your child’s teachers, coaches, and other authority figures know about their epilepsy. Adults may be more circumspect, but it’s critical for them to have help from some coworkers or bosses if an episode hits at work. You can help to craft those difficult conversations.
The more you know about autism and epilepsy, the better you can support the person you love. Doctors, therapists, and other medical professionals may have plenty of advice for you. Ask for written materials you can study at home, and ask for any autism-specific materials you can share with the person you love.
National and local resources may also be helpful as you look for support and tools. Consider reaching out to these resources:
- The Epilepsy Foundation: Connect with parent support groups, tap into adult or teen support groups, or link up with children’s programs.
- The Autism Society: Reach out to chapters located within your state. Some hold meetings that are specific to epilepsy, while others focus exclusively on autism challenges.
- Local Autism Speaks chapters: Connect with other autism caregivers, or look into resources made for adults living with autism.
- Your local hospital: Many community hospitals hold issue-specific support groups. There’s typically no charge to participate, and you could walk away with a meaningful toolkit. Reach out to the hospital near you for more information.
If you can’t find the support you need, ask your therapist for advice. Many mental health professionals have deep roots in the support community, and they can guide you to the tools that make the most sense for you right now.
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Autism and Epilepsy Resources. Autism Speaks Canada.
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There’s a Link Between Autism And Epilepsy, and Scientists Might Have Figured It Out. (April 2018). Science Alert.