What is the Connection Between Autism and Epilepsy?

Epilepsy Foundation Expert Discusses the Comorbid Condition and How it Relates to ASD

When it comes to comorbidities, autism spectrum disorder (ASD) is often discussed alongside mental health conditions such as ADHD and anxiety, but there are other medical conditions that can overlap, such as epilepsy.

While epilepsy is less common than autism, there is an association between the two diagnoses. Some research suggests that 30 to 35% of autistic individuals also have epilepsy, meaning nearly one in three people with autism is affected by the condition.

We connected with Epilepsy Foundation of Greater Chicago VP of Health Equity Education and Advocacy Ayesha Akhtar, MPH, to provide more insight for Hopebridge’s autism families. Starting with the basics, she talked us through what to look for and how to get support for children who may be experiencing symptoms of epilepsy.

What is Epilepsy and How is it Related to Autism?

Before getting into epilepsy, it’s important to first dial back and define a seizure.

Much like a cell phone sends and receives messages all day every day, our brains have neurons that constantly transmit cells and tell us what to do. When there are too many cell signals in one area, there can be a cross-firing and communication breakdown. The brain can act similarly – when there are too many neurons in one area, they can cross, misfire and then produce what we call “electrical storms.” That storm is the actual seizure moment.

A seizure can cause a person to change their behaviors, movements, senses and/or awareness. There are more than 20 different types of seizures that can occur.

Having a single seizure does not equate to having epilepsy. One in 10 people will have a seizure in their lifetime. Epilepsy is defined as a chronological, neurological disorder marked by having unprovoked, recurring seizures.

Much of the relationship between epilepsy and autism is unknown because there is only an association between the two diagnoses. Within the various epilepsy categories, there are syndromes, some of which are genetic. Most of the data available points to genetic disorders as the link between autism and epilepsy, but studies have not yet been able to determine whether one variable causes another.

What Autism Families Need to Know About Epilepsy

It can be tricky for autism families to know when their child also has epilepsy. Some people will display outward signs for both conditions, but it can be difficult to determine which one is causing which symptom.

Parents and caregivers, if you have a suspicion your child might have autism, here are some key notes and tips to keep in mind:

• Following seizure first aid tips can help keep a child safe.
  If a person is having a seizure, especially if it is a convulsive seizure or involves wandering, there are three main tips. First, stay with the person. Keep them out of harm’s way, which may mean helping them to the ground. Turn them onto their side if they are not awake or conscious. Do not restrain them or try to snap them out of it, as they will not know what is happening to their body. For more detailed advice, we have seizure first aid tips and more available in multiple languages on the Epilepsy Foundation website.
• Signs of epilepsy appear in patterns.
  Take note if a child repeatedly exhibits the same type of behavior that is different than their typical behaviors (even those that may be related to autism). For instance, a focal seizure can lead to automatism or repetitive, purposeless movements, such as a child ringing their arm in the same type of way, but they are unaware they are doing it. Though it may be difficult, it is helpful to record notes and videos when it occurs so they can be shared with a physician.
• Some symptoms of epilepsy can look like signs of autism.
  Repetitive behaviors associated with autism – known as stimming or self-stimulatory behavior – can sometimes be confused with seizures. The best way to distinguish between a seizure and stimming is to determine whether there is a loss of consciousness or impaired awareness. Wandering is another common symptom of epilepsy. Trouble may occur when a child is not able to explain whether they are aware of the situation, which sometimes happens if they are non-speaking or have challenges with communication. This is partly why it is so critical to speak with an epilepsy specialist if you have any concerns.
• Following seizure first aid tips can help keep a child safe.
  If a person is having a seizure, especially if it is a convulsive seizure or involves wandering, there are three main tips. First, stay with the person. Keep them out of harm’s way, which may mean helping them to the ground. Turn them onto their side if they are not awake or conscious. Do not restrain them or try to snap them out of it, as they will not know what is happening to their body. For more detailed advice, we have seizure first aid tips and more available in multiple languages on the Epilepsy Foundation website.
• An epilepsy specialist can diagnose – or rule out – epilepsy.
  Neurologists who have additional training in epilepsy are known as epileptologists, and it’s crucial to see one as soon as there are seizure concerns. They can conduct an electroencephalogram (EEG), which will show the electrical storms in the brain and is the most conclusive test for epilepsy. For a list of epileptologists near you, visit the website for the National Association of Epilepsy Centers, or speak with your pediatrician if you need a referral.
• Not all seizure symptoms mean a child has epilepsy.
  It can be nerve-wracking for families who believe their child may be experiencing seizures, but try not to stress because there is help available. Many times, individuals present seizure symptoms but do not have epilepsy. In these cases, seizures could be a sign of something else, such as psychogenic nonepileptic seizures (PNES), which is not epilepsy but can be determined by an EEG and treated appropriately by a psychiatrist using cognitive behavioral therapy.
• Noticing and diagnosing epilepsy early can lead to a better quality of life.
  Just as with autism, if you are concerned your child is showing signs of epilepsy, don’t wait to get answers. Epilepsy is a chronic disorder that can unfortunately also be expensive, but the good news is, help is available. If you can get it diagnosed early, children can have a better outlook for life because they can get treatment much quicker. Once seeking help, parents should also know that it’s ok to get a second opinion if your gut doesn’t match what you’re being told.
• Children with both autism and epilepsy benefit from a communicative, collaborative care team.
  When a child has autism and epilepsy, it is beneficial to have a comprehensive care team that supports mental health, behavioral health and neurological health. For example, a care team could include an epileptologist, psychologist and nutritionist, in addition to a board certified behavior analyst (BCBA) and speech-language pathologist (SLP), all working together. It’s one organ, one brain, but a collaborative, interdisciplinary team approaches it from multiple ways, so it’s important everyone communicates for a shared understanding. This is especially important as medications and adjunctive therapy like cognitive behavioral therapy (CBT) and dietary therapy may be involved. Autism interventions like applied behavior analysis (ABA therapy) can also help children prepare for doctors’ appointments and tolerate any necessary tests, such as the EEG, which can last anywhere from two hours to seven days, depending on whether they need to create triggers and what the seizure activity is for the child.

– Ayesha Akhtar, MPH, Director of Health Equity, Epilepsy Foundation of Greater Chicago

Get Support for Autism and Epilepsy

The foundation of Hopebridge was built off comprehensive, collaborative care. We know how imperative it is for children and families to get access to quality care, whether it be for autism or other areas that need support.

That’s why we want to highlight the cooccurrence of epilepsy and work with the Epilepsy Foundation of Greater Chicago to get families like yours more information and services, if needed. The organization provides free counseling, clinical services and case management and school training to educate staff on seizure first aid training. The local Epilepsy Foundations across the country make it easy for families to get involved, providing a support system for them right away. For families who are seeking more support around autism, Hopebridge is here for you, too. Reach out to us to arrange autism testing, ABA therapy or other interdisciplinary services at one of our centers near you.

*Informed consent was obtained from the participants in this article. This information should not be captured and reused without express permission from Hopebridge, LLC. Testimonials are solicited as part of an open casting call process for testimonials from former client caregivers. Hopebridge does not permit clinical employees to solicit or use testimonials about therapeutic services received from current clients (Ethics Code for Behavior Analysts 5.07-5.08; BACB, 2020). Hopebridge does not provide any incentives, compensation, or renumeration for testimonials provided by a former client or client caregiver.