Just before my son received his autism diagnosis at the age of five, he was diagnosed with a partial complex seizure disorder. When we took him to the Children’s Developmental Service Agency, or CDSA, as a three-year-old, to learn more about his behavior and language differences, the psychologist suggested we schedule testing with a neurologist to rule out seizures as a causal factor.
Following an MRI and a sleep-deprived EEG, the results confirmed abnormal brainwaves and the likelihood of epilepsy. Because his seizures were happening at night while everyone was asleep and we were not co-sleeping, we had no idea they were occurring.
In explaining what having a seizure might be like, the doctor said it was kind of like watching TV when suddenly an outside interference would cause the audio to become intermittent with static, and the screen to be distorted by fuzzy lines. That was over 20 years ago, so in today’s world, it may be like your HD TV suddenly pixelating. If you have experienced this, you can understand how difficult it is to follow what you are seeing and hearing.
Imagine how this would impact a child learning to speak and navigate life. If these disruptions in sensory input happen with frequency, it may be difficult to learn. Upon our neurologist’s advice, we started seizure medication, and the results were impressive. He continued to show signs of autism; however, he was much more verbal and interested in others.
Everyone’s life with autism is different. You may not be aware of this, but November is National Epilepsy Awareness Month. If you are not familiar with this condition, it would be good to learn more. It is important to understand the relationship between seizures and epilepsy. According to the Epilepsy Foundation, “seizures are sudden, temporary, bursts of electrical activity in the brain that causes temporary changes in the way a person moves, feels, or thinks”. The way a seizure may look to others can range from violent, rhythmic movements of the body or body part to body limpness, to something similar to daydreaming. They can last several seconds to several minutes. Seizures can be a one-time occurrence and can be brought on by a variety of causes, including high fever, illness, or contact with a toxic substance.
“1 in 10 people will have a seizure and 1 in 26 will develop epilepsy during their lifetime.”
Seizures are connected to epilepsy, as epilepsy is a brain disorder that causes recurring, unprovoked seizures. After two non-provoked seizures, a doctor may diagnose someone with epilepsy. That may also happen after one non-provoked seizure where it seems likely other seizures will follow. A seizure is non-provoked if it is not caused by a head injury, medication, or a high fever.
Here are some facts from the Epilepsy Foundation’s website:
- 1 in 10 people will have a seizure and 1 in 26 will develop epilepsy during their lifetime.
- There are 3.4 million people living with epilepsy in the United States; 470,000 of them are children.
- Epilepsy is a neurological disorder that can affect any one of us regardless of race, age, or gender.
- Seizures are a symptom of epilepsy. Not all seizures are the same. Many people with epilepsy have more than one type of seizure.
As you can see, epilepsy is more common than autism, which currently presents itself at a rate of 1 in 36 in the US. Unless your loved one with autism also has seizures, you may not know that these two conditions are comorbid, existing together.
Researching the question of commonality, the range of people on the autism spectrum with comorbid seizures is between 20% and 33% (Epilepsy Foundation). The number of individuals with epilepsy who are later diagnosed with autism is extremely small. According to the Ohio State University Wexner Medical Center website, “Up to 20% of people with autism may not have their first seizure until adulthood.” [Epilepsy and Autism What to know about the overlap between epilepsy and autism;] However, if an individual has an autism diagnosis, the comorbidity of epilepsy is greater. According to the Autism Research Institute, “…one of the largest studies aimed at identifying the prevalence of epilepsy in children with autism found that among children aged 13 years and older with ASD, 26% were diagnosed with epilepsy. (Viscidi E.W. et. al, 2013). In other words, if a child has been diagnosed with epilepsy, they have a small chance of also having autism; however, if a child has an autism diagnosis, they have a much higher likelihood of also being diagnosed with epilepsy later.
Those with autism and seizures likely present with motor differences, language challenges, and skill regression. You may wonder if those who have autism have specific kinds of seizures. The answer to that question is no. Just as neurotypical people can experience different kinds of seizures, the same is true for those with ASD.
There are many kinds of seizures and a few years ago the terms used to describe them were changed to give a more specific description. On the Epilepsy Foundation website, seizures are characterized by three categories now:
- Generalized Onset Seizures affect both sides of the brain or groups of cells on both sides of the brain at the same time. This term was used before and still includes seizure descriptors like tonic-clonic, atonic, and absence. Tonic-clonic means the person exhibited periods of body stiffness followed by periods of shakiness or jerkiness in the body or body parts. Atonic means the body is relaxed or limp. In the past, these may have been referred to as convulsions. Absence seizures are non-convulsive and appear as if one is staring off into space with a blank expression.
- Focal Onset Seizures start in one area or group of cells on one side of the brain. The former term, partial did not specify location as well as focal. Focal Onset seizures can be further classified as focal onset aware or focal onset unaware depending on the individual’s awareness state during the seizure. In the past, these were called simple partial if the person was “awake” or complex partial if the person presented as being unconscious. So now seizures are classified as Focal Onset Aware Seizures and Focal Onset Impaired Awareness, depending on whether the person is aware or unconscious.
- Unknown Onset Seizures are those that occur, and it is difficult to determine when they start. They are often classified as such because no one is there to witness them, or the witness comes to see a seizure already in progress. If motor activity is observed, it can be tonic-clonic or epileptic spasms. If there is not motor activity, then the behavior would be described as behavior arrest, which means the individual is completely still or staring into space. Unknown Onset Seizures are studied further and lead to a re-classification as either a Focal Onset Seizure or a Generalized Onset Seizure.
What to do if You Observe a Seizure: Epilepsy Ontario gives the following advice-
- STAY CALM – Seizures usually end on their own within seconds or a few minutes.
- CREATE A SAFE SPACE – Move sharp objects out of the way. If the person falls, place something soft under their head and roll them on their side as the seizure subsides. If the person wanders, stay by their side and gently steer them away from danger.
- TIME IT – Note the time the seizure begins and ends.
- CALL 911 IF:
- The seizure lasts more than 5 minutes, or it repeats without full recovery between seizures.
- If consciousness or regular breathing does not return after the seizure ends.
- The person is pregnant, has diabetes, appears injured, or is in water.
- You are not sure if the person has epilepsy or a seizure disorder.
- PROVIDE REASSURANCE – When the seizure ends, stay with them until complete awareness returns.
- Restrain the person.
- Put anything in their mouth.
When someone comes out of a seizure, they can be confused, disoriented, and frightened, so it is important to reassure them that they are okay. Talk to them calmly and let them rest. Also, jot down notes to share with your child’s pediatrician if they do not have a neurologist. Describe the length of time the suspected seizure lasted as well as a description of what you observed. Because seizures can reoccur, you should call your child’s doctor and report the event. It is likely further testing may be necessary.
“Some people with epilepsy have an aura that alerts them that they are about to seizure…”
Symptoms to look for if you Suspect Seizures:
As a parent of a child of any age with autism, you may be worried about missing symptoms of seizure occurrence since you can’t keep eyes on your loved one constantly day and night. Behaviors that may be a sign of seizure include, falling or unexplained bruises or injuries, rhythmic kicking or knocking sound at night when the individual is asleep, unexplained bleeding or injury to the tongue, loss of continence of the bladder or bowels for someone who has been toilet trained. Another sign is an epileptic cry as air rushes out of the lungs as the seizure begins. Upon having a seizure, one may be confused or disoriented. They may be extremely tired and need to rest or fall asleep. If they are asleep, it will be difficult to wake them up.
Some people with epilepsy have an aura that alerts them that they are about to seizure. This can be a sensation like a tingling movement in the body, or déjà vu, an odd taste, or even a period of dizziness, lightheadedness, or numbness. Headaches and upset stomachs are common auras. The person may also be overcome with fear or panic prior to a seizure. Although auras are different depending on the kind of seizure one may have, not all people with epilepsy have auras.
If you note any of the behaviors listed above, note them, and share them with your child’s doctor. Because epilepsy can complicate the life of someone with autism, it is important to get medical care to control it so that life is easier to understand and enjoy. Epilepsy is a medical condition and treatment is likely to be covered by insurance.
- Epilepsy Foundation
- Epilepsy and Autism What to know about the overlap between Epilepsy and Autism, Ohio State University Wexner Medical Center
- Autism and Seizures, Autism Research Institute, Viscidi E.W. et. al, 2013
- Autism and Health Toolkit
- Recognizing and Treating Co-Occurring Medical Problems in ASD