Seizures and Autism

This article is based on a video discussion by Dr. Puja Grover Kapoor, a pediatric neurologist deeply committed to supporting neurodivergent children. 

In her talk, she explores the important link between autism and seizures, offering clarity on questions that many families often ask.

• What is the prevalence of seizures in autism?
• How does my child get seizures?
• What are the things we should learn about when a child has seizures?
• How to differentiate between a behavioural concern and a seizure?
• How to treat seizures?

You can also check out the video by Dr. Ram Kairam on seizures and autism: Is there an increased incidence of seizures in children with Autism? 

Seizures and Autism: Prevalence & Puberty

• In the general population, seizures affect about 1%–2% of children. 
• Among children with autism spectrum disorder (ASD), the risk is much higher — up to 30%–33% may develop epilepsy.
• The peak incidence of seizures in autism is often observed between the ages of 13–17 years. 
• Seizures can occur earlier, but the risk increases significantly with puberty, influenced by hormonal changes etc.

How Seizures Present in Children

Children with epilepsy may experience different types of seizures. Recognizing these presentations helps caregivers, teachers, and parents respond quickly and appropriately.

1. Generalised Tonic–Clonic Seizures

• Tonic phase: sudden stiffening or stretching of the limbs.
• Clonic phase: rhythmic jerking movements, often starting in one limb and spreading across the body.
• These seizures usually last from a few seconds to a few minutes.

2. Absence seizures

• These are brief staring spells where the child appears “lost” or unresponsive for a few seconds. 
• Children with ASD may naturally stare into space, making absence seizures harder to identify.
• Electroencephalogram (EEG) is one of the most effective tools to confirm absence seizures. 
• Clinical signs such as reduced responsiveness or deterioration in health are considered alongside EEG findings.

3. Atonic seizures

• In atonic seizures, there may be a sudden loss of muscle tone, causing the child to collapse or fall. 
• There is a high chance of injury due to unexpected loss of control in such cases. 
• It is therefore important to ensure safety measures (e.g., protective headgear, safe environment) to minimize harm.

What to do when a child has a seizure?

• Stay calm: Do not panic — rushing may harm the child more than help. 
• Rescue position: Gently turn the child onto their side (lateral position) to prevent saliva pooling and choking. 
• Clear the area: Remove harmful or sharp objects nearby to reduce risk of injury.
• Medication support: If prescribed and trained, administer midazolam spray as directed.
• First seizure: If this is the child’s first seizure, take them to a doctor once they recover.
• Prolonged seizure: If the seizure lasts longer than 15 minutes, seek immediate emergency care for IV treatment.

Management of seizures in children with autism

Investigations after the first seizure

• Tools such as EEG or Magnetic Resonance Imaging (MRI) are used to assess risk.
• If EEG findings do not indicate a high risk of recurrence, medications may not be prescribed immediately.

Importance of anti‑epileptic medication

• Dr. Puja Grover Kapoor emphasizes that appropriate use of anti‑epileptic medicines is crucial. Parents may hesitate due to concerns about side effects, but:

• The risk of brain injury from recurring seizures is far greater than potential side effects.
• Medications help prevent long‑term harm and improve quality of life.

• It is noteworthy, that while the incidence of seizures in autism is higher, they are often less frequent compared to seizures in the general population.
• Children with autism often respond well to low doses of medication. In many cases, a single dose works effectively to control seizures.
• They are prescribed to prevent subsequent seizures or prolonged seizures.
• Helps avoid medical emergencies related to epilepsy.

Effectiveness and safety

• Often effective when taken strictly as advised by a doctor. Generally considered safe, especially when doses are maintained at small levels.
• Prescription required – they are not available over the counter (OTC).

Side effects

• Possible increase in appetite.
• May lead to weight gain.

Dietary guidance

• Avoid high-sugar foods.
• Prefer protein-rich meals.
• Do not suppress food intake; instead, balance with salads and fresh vegetables.

In this video, Dr. Pooja also answers some parent questions. Some of those questions have been highlighted here in this article.

1. I have observed body twitching while the child is falling asleep or before waking up. Are these seizures?

• Many children experience benign sleep-related movements during the “twilight phase” between wakefulness and sleep. These are often harmless and not seizures.
• Infantile spasms are a specific type of seizure seen in infants, usually involving sudden jerks or stiffening. Distinguishing between benign twitches and seizures requires careful observation.
• Dr. Pooja suggests recording a video of the event that can help doctors see exactly what’s happening. 
• She also suggests noting details such as:
  • the child’s age 
  • time of day (falling asleep vs. waking up) 
  • frequency and duration of twitching and 
  • observing for other symptoms

2. Does MMR vaccine cause regression in children?

• Some years ago, a study suggested a link between the Measles, Mumps, Rubella (MMR) and developmental regression (including autism). This caused understandable worry among parents worldwide.
• However, extensive research across multiple countries has disproved any connection between the MMR vaccine and regression or autism. 
• The original study that raised the concern was found to be flawed and it has since been fully retracted.
• Global health authorities (WHO, CDC, IAP in India) confirm that the vaccine is safe and effective.
• The MMR vaccine protects against serious, preventable diseases that can cause complications far more dangerous than any rumored side effects.
• Ensuring children are vaccinated helps protect not only them but also the wider community. 

3. My son who is 21 now, has autism and has been having seizures since the age of 3 months? He is on medication, what else can we do?

• Strict adherence to prescribed schedules is crucial for anti-epileptic medications to work effectively. 
• Skipping doses or changing them without medical advice can increase the risk of seizures and emergencies.
• Only the doctor should titrate (adjust) or change doses. Each child’s needs are unique, so the doctor balances effectiveness with safety
• Doctors carefully evaluate possible side effects. They weigh whether a new medicine may cause more harm than benefit before prescribing.
• Give medicines exactly as advised. Keep a medication diary to track doses and any side effects.
• In cases where 1 or more medications does not show much effect, there are specific diets that may be recommended by your doctor including:
  • Ketogenic diet 
  • Modified Atkin’s diet
• These are medical nutrition therapies, not general diets, and must be supervised by a healthcare team. 
• These diets focus on decreasing the carbohydrate content while allowing more flexibility with protein and fat. 
• This has shown to reduce the incidence of seizures with fewer side effects. Please remember, work with your doctor closely and start any diets only if it is prescribed by your doctor.

4. My son (7 years of age) was doing an activity and suddenly started staring in a direction  with no response. He did not eat or drink anything and looked drained? The child slept for 2 hours after the incidence of the seizure.

• Based on the mother’s description, the event resembles absence seizures more than stereotypical behaviors. 
• The fact that the child had a long sleep afterwards helps differentiate it from simple, benign behaviors.
• Dr.Pooja suggests the mother make and share a video of the episode with the doctor. 
• Only a pediatric neurologist can confirm whether these are absence seizures or benign movements. Early diagnosis is important, since absence seizures can be managed effectively with medication.

5. My son is 20 years old and has developed seizures now. Will they stop in the future?

• When seizures start later in life, it’s harder to predict whether they will stop completely. 
• Some individuals respond well to medication and may remain seizure-free for years, while others may need long-term treatment.
• Dr. Pooja guides the parents by mentioning that if their son remains seizure-free for 2–3 years and his EEG is normal, doctors may consider gradually tapering medications. This tapering must always be done under medical supervision to avoid recurrence.
• She reiterates here, that each person’s course is unique. Decisions depend on:
  • The type of seizures
  • EEG findings
  • Overall health and response to medication
• The goal is to control seizures safely and minimize side effects. 
• Long-term outlook can be positive, but it requires close follow-up with a neurologist.

6. What are the chances of seizures in children with autism and what are the ages to be watchful for?

• As mentioned previously in this article, children with autism have a significantly higher risk of seizures compared to the general population. 
• Studies show that up to 30% of children with autism are likely to have seizures. 
• Children aged 13 and older have a higher risk of developing epilepsy, with seizures most commonly appearing during the onset of puberty, though they can occur at any age.

7. Are there any pre-epileptic symptoms?

Some children may show changes minutes to hours before a seizure, such as:

• Irritability or discomfort 
• Sudden mood changes (anxiety, restlessness, sadness)
• Unusual sensations (tingling, visual changes

8. Is CBD oil recommended for seizures in teens?

Research on Cannabidiol (CBD) oil for epilepsy is still limited. Dr. Pooja talks about the use of CBD oil by highlighting the following:

• For broader epilepsy cases, especially when seizures are not optimally controlled, evidence is not strong enough to recommend CBD oil as a first-line option
• Doctors usually advise trying other anti-epileptic medications that have proven efficacy and safety before considering CBD oil 
• Use of CBD oil is associated with severe side effects.
• Therefore, CBD oil is not a standard treatment for teens with uncontrolled seizures.
  

9. Is there an issue if the child has missed his medication?

Dr. Pooja stresses on the fact that medications should be given on time. 

• Anti-epileptic medications work best when taken exactly as prescribed. Consistent blood levels of the drug are needed to prevent seizures.
• Minor delays (e.g., giving the dose an hour late) usually don’t cause major problems. 
• Skipping doses entirely or large timing changes can lower medication levels enough to trigger seizures.
• Repeated missed doses increase the risk of breakthrough seizures and emergencies.

10. My son is 3.5 years old. His EEG showed abnormal activity, and he was on medication for 5 months. However, there were no changes in the EEG afterward, and we have not observed any physical seizures. 

• An abnormal EEG does not always mean seizures are present. If there are no physical signs of seizures and milestones are on track, marginal EEG changes alone are not an indication to start anti‑epileptic medications.
• Clinical correlation is essential: EEG findings should be interpreted alongside observed behaviors and medical history.
• Children with autism may show sensory responses that appear as deviations in EEG. It is important to differentiate sensory activity from actual seizure activity to avoid unnecessary treatment.
• Dr. Pooja reminds parents to not start anti‑epileptic medications unless EEG changes are supported by clinical evidence. 
• Parents should record and note observations (behaviors, unusual episodes, triggers) and share them with their doctor.
• If there are concerns in the child’s medical history (e.g., low blood sugar, metabolic issues, or other clinical signs), these must be correlated with appropriate investigative tools such as MRI and a complete medical evaluation before considering anti‑epileptic medication.
• Sensory sensitivities in autism may show deviations in EEG. It is important to differentiate between sensory responses and actual seizures. 
• Be cautious about randomly performing EEGs in children with autism without proper clinical collaboration, as this may lead to confusion or misinterpretation.

Awareness, medical monitoring, and supportive environments are essential to help families navigate this stage.

Acknowledgement: We are thankful to The Special Mom and Kreeti Mitra Bhatia for creating and sharing the above video with Nayi Disha.

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If you have questions about Autism, Down Syndrome, ADHD, or other intellectual disabilities, or have concerns about developmental delays in a child, the Nayi Disha team is here to help. For any questions or queries, please get in touch with our FREE Helpline at 844-844-8996. You can call or what’s app us. Our counselors speak different languages including English, Hindi, Malayalam, Gujarati, Marathi, Telugu, and Bengali.

DISCLAIMER: Please note that this article is for information purposes only.