Autism and Epilepsy Resources

It is estimated that as many as 1/3 of individuals with autism spectrum disorder also have epilepsy. Epilepsy is a brain disorder marked by recurring seizures, or convulsions.

Experts propose that some of the brain abnormalities that are associated with autism may contribute to seizures. These abnormalities can cause changes in brain activity by disrupting neurons in the brain. Neurons are cells that process and transmit information and send signals to the rest of the body. So overloads or disturbances in the activity of these neurons can result in imbalances that cause seizures. 

To learn more about how to recognize and treat epilepsy, visit the Treatments section of our What is Autism page.

Recognizing Epilepsy Symptoms

Seizures can begin at any age. Characteristic symptoms include:

  • Unexplained staring spells
  • Stiffening of muscles
  • Involuntary jerking of limbs
  • Facial twitching
  • Unexplained confusion
  • Severe headaches

Other less-specific symptoms can include:

  • Sleepiness or sleep disturbances
  • Marked and unexplained irritability or aggressiveness
  • Regression in normal development

Types of Seizures

Like autism, epilepsy exists on a spectrum. Severity varies widely among people with epilepsy. There are several types of seizures, each with somewhat different symptoms:

  • Tonic-clonic seizures are the most common. Also known as gran mal seizures, they produce muscle stiffening followed by jerking. Gran mal seizures also produce loss of consciousness.
  • Absence seizures can be difficult to recognize. Also known as petit mal seizures, they are marked by periods of unresponsiveness. The person may stare into space. He or she may or may not exhibit jerking or twitching. 
  • Tonic seizures involve muscle stiffening alone. 
  • Clonic seizures involve repeated jerking movements on both sides of the body. 
  • Myoclonic seizures involve jerking or twitching of the upper body, arms or legs. 
  • Atonic seizures involve sudden limpness, or loss of muscle tone. The person may fall or drop his or her head involuntarily.

Treatment of Epilepsy

If you suspect your loved one with autism may be having seizures, you will want to work with a neurologist that specializes in seizure disorders. 

Most likely, the neurologist will order an electroencephalogram (EEG). An EEG is a noninvasive process that involves the placing of electrodes on an individual’s head in order to monitor activity in the brain. By analyzing the brain activity patterns that the EEG measures, the neurologist can determine if someone is having seizures.  

After an epilepsy diagnosis, the doctor usually selects an anti-epileptic medication based on several considerations such as the type and severity of seizures and their associated EEG patterns. These drugs do not cure epilepsy. In most cases, however, they can prevent or minimize seizures. Right now, U.S. doctors can choose from more than twenty medications!

Epilepsy drugs eliminate seizures in around two-thirds of patients. More difficult-to-control cases sometimes respond to combinations of two or more medications. If medications fail to control seizures, you can discuss other options with your doctor. Some doctors suggest surgery to remove the part of the brain that is causing the seizures.

Others might recommend a so-called ketogenic diet. In this type of diet, each meal has about four times as much fat as protein or carbohydrate. This diet mimics starvation by burning fat for energy, rather than carbohydrates. Though doctors aren't sure why yet, ketogenic diets have been effective in controlling seizures for some patients. According to the Epilepsy Foundation, about a third of children who try the ketogenic diet become seizure free, or almost seizure free. Another third improve but still have some seizures. The rest either do not respond at all or find it too hard to continue with the diet, either because of side effects or because they can't tolerate the food. When trying this diet, it is critical that an individual is advised and monitored by an experienced nutrionist or medical professional. 

SUDEP: Sudden Unexpected Death in Epilepsy

We know that the combination of autism and epilepsy is often associated with overall poor health, and in extreme circumstances, premature death. Though most neurologists and physicians choose to ignore this frightening topic, it is important to know that in rare occasions, epilepsy can be fatal. The incidence of Sudden Unexpected Death in Epilepsy (SUDEP) ranges in different studies from 0.9 – 93 cases per 10,000 people per year (Tomson et al. 2008). 

SUDEP is more likely in people with uncontrolled grand mal seizures, or those who are having seizures but not taking adequate doses of antiepileptic medications. Causes include pauses in breathing, heart rhythm problems, brain dysfunction, or a mix of these. Click here to learn more information about SUDEP from epilepsy.com. 

There are various strategies to help prevent SUDEP. Obviously, controlling seizures as much as possible is the best option. Finding the right medicines and ensuring that your loved one takes the proper dosage at the proper time is critical. There are lots of researchers and companies currently working on seizure monitors to notify caretakers when a seizure is beginning. There are currently some seizure monitors that families have found helpful as the monitors are able to alert them when a seizure is occuring or about to occur. A few bed monitors are listed in the resources below. 

Epilepsy Resources

Below are some resources and websites that may be helpful to individuals with both diagnoses and their families:

Explaining Seizures to Children with Epilepsy and Their Peers
Sometimes it can be difficult for children to understand what is happening when they are having a seizure. In addition, it can be very scary for their peers or friends who witness them. Autism Speaks has put together Visual Stories to explain to children how people with epilepsy are just like everyone else!
Visual Story for Children with Epilepsy
Visual Story for Peers of Children with Epilepsy

Autism, Epilepsy & Seizures: How to Recognize the Signs and Basic First Aid When You Do
A brochure by the Daniel Jordan Fiddle Foundation.
www.djfiddlefoundation.org
If a family member suffers from seizures, you may want to consider a medical alert bracelet that can inform first responders of the seizure disorder and any medications that the individual may take. There are a variety of options available on the internet.

CURE: Citizens United for Research in Epilepsy
Citizens United for Research in Epilepsy is a nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease.
www.cureepilepsy.org

Epilepsy and My Child
If you have a child with epilepsy, this website is for you. Whether your child was just diagnosed, or you have specific concerns about medications, getting support at school, or another issue, our goal is to provide the information you need.
www.epilepsyandmychild.org
This parents website is a product of the Epilepsy Foundation

Epilepsy.com
Information.Community.Empowerment.
www.epilepsy.com

Finding A Cure for Epilepsy and Seizures (FACES)
Finding A Cure for Epilepsy and Seizures is a non-profit organization that works in conjunction with the NYU Comprehensive Epilepsy Center to raise funds to improve the quality of life for all those affected by epilepsy through clinical care, education, and research.
FACES Pediatric Epilepsy Resource Handbook

Epilepsy Information
Learn more about epilepsy and find more resources from the National Institution of Neurological Disorders and Stroke, a division of the National Institutes of Health.
www.ninds.nih.gov/disorders/epilepsy/epilepsy.htm

The Matty Fund
The Matty Fund ® will provide family resources, promote patient safety and improve the quality of life for children and families living with epilepsy. The Matty Fund has been providing programs and services to families of children with epilepsy for ten years.
mattyfund.org

Treatments for Associated Medical and Behavioral Issues
This subpage of the Autism Speaks What is Autism section of our website contains information about seizure disorders.
www.autismspeaks.org/what-autism/treatment/treatment-associated-medical-conditions

How Common are Seizures Among People with Autism, and What Can Help?
Blog post written by Roberto Tuchman, MD, director of the autism program at Miami Children’s Hospital, and a member of the Autism Speaks scientific advisory committee; and Michael Rosanoff, MPH, Autism Speaks associate director of public health research and scientific review.
autismspeaks.org/blog

Canaries, Autism and Sensory Overload 
This blog post about the suspected higher vulnerability of young people with ASD to seizures from video games is written by a parent described by Epilepsy Professional magazine as an authority on photosensitivity and neurological dysfunction.
videogameseizures.wordpress.com

Silently Seizing: The Book
Common, Unrecognized, and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals with Autism Spectrum Disorders
Silently Seizing is a guidebook to help parents and professionals look outside the box when diagnosing and treating autism. The information contained in its pages is revolutionary, supported by emerging research and commentaries from experts in the field.
www.silentlyseizing.com

Kids Safety Bands
A Kid Safety Band is the pioneering silicone wristband designed specifically for children and other dependents. Parents customize their child's safety band with the initials of their child along with their contact number(s), and other medical information.
www.kidssafetybands.com

Bed Monitors

Bed Seizure Alarm
These devices are designed to monitor one person during sleep and will detect shaking or jerking movements such as those encountered during convulsive seizures, as well as sounds/noises. In such an instance, the device transmits a signal to the alarm pager (or both pagers if they are both on) which alerts the parent/service provider.
www.bedseizurealarm.com

Emfit Movement Monitor
The Emfit Movement Monitor is the latest technology for monitoring an individual who, during sleep, may experience certain types of movements which a caregiver or family member should be alerted to. The Emfit Movement Monitor is ideal for monitoring and detecting abnormal movements such as muscle spasms associated with a sleeping person.
www.emfit.com

For a list of other safety products, please visit the Autism Speaks Resource Library page for Safety Products here.

Disclaimer

Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided on this website is not a recommendation, referral, or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal, or educational professionals. Autism Speaks has not validated and is not responsible for any information or services provided by third parties. You are urged to use independent judgment and request references when considering any resource associated with the provision of services related to autism.