Autism and Epilepsy Resources

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Epilepsy is a brain disorder marked by recurring seizures, or convulsions. It affects a fifth to a third of people who have autism, compared to an estimated 1 to 2 percent of the general population (Spence 2009). The autism-epilepsy overlap appears to be most common among people who also have intellectual disability. (Amiet 2008)

Experts propose that some of the developmental brain changes associated with autism also contribute to seizures. These differences in brain development appear to cause changes in the activity of brain nerve cells, or neurons. Neurons process and transmit information and send signals to the rest of the body. Certain disturbances in their activity can cause seizures.

Identifying and effectively treating epilepsy is critically important, given the potential for brain damage and death from uncontrolled seizures.While the association between epilepsy and autism is well known, diagnosis can be challenging because seizures are not always outwardly evident, and many people with autism have difficulty recognizing and communicating their symptoms.

Recognizing epilepsy in someone with autism

Seizures can begin at any age, though research has identified two peaks in onset among children with autism – in the preschool years and again in adolescence (Rossi 2000). Characteristic symptoms include:

  • Unexplained staring spells
  • Stiffening of muscles
  • Involuntary jerking of limbs

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. In addition, experts now distinguish seizures by where they begin in the brain. This is important because it affects the choice of seizure medication, the potential benefit of epilepsy surgery, future outcomes and possible causes. (Fisher 2017)

Diagnosing and treating epilepsy in those affected by autism

Suspicion of seizures warrants prompt evaluation by a neurologist. The neurologist may order an electroencephalogram (EEG). An EEG is a noninvasive process that involves placing electrodes on the head to monitor activity in the brain. By analyzing EEG patterns, neurologist can identify seizures and other altered brain activity of concern. Often patients who have autism need EEG protocols that address their sesnory and communication challenges. For autism-friendly strategies to prepare for an EEG, see the Autism Speaks ATN-AIR-P EEG tool kits for parents and professionals.

Treating epilepsy in patients who have autism follows the same principles as treatment of epilepsy in other people. Typically, 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.!

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. Vagus nerve stimulation is a technique that prevents seizures by sending pulses of electrical energy to the brain through a device that actsl lie a pacemaker for the brain.

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.

EEG Tool Kits from AS-ATN/AIR-P

Parents and providers may have concerns or questions about how to help children with ASD successfully complete EEGs, which can be very difficult for individuals with autism. Two tool kits (one for parents and one for providers) are now available and provide information about the EEG procedure, how a child’s ASD diagnosis might impact his or her experience and how to help children with ASD successfully prepare for and complete an EEG.

Download the tool kits here

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

ATN/AIR-P Guides to EEGs for Parents and Professionals
These two tool kits (one for parents and one for providers) from Autism Speaks provide information about the EEG procedure, how a child’s ASD diagnosis might impact his or her experience, and how to help children with ASD successfully prepare for and complete an EEG.
autismspeaks.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

14 Effects of Epilepsy on the Body 
An infographic detailing the effects of epilepsy on the body.  This is an interactive chart allowing the reader to pick the side effect they want to learn more about.
www.healthline.com

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.

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