Why Epilepsy Awareness Matters in Autism Discussions

Denby Williams

Looking at the prevalence rate of epilepsy among autistic individuals, approximately 25-30% of children with Autism Spectrum Disorder (ASD) will develop epilepsy in their lifetime. This is compared to the much lower prevalence rate of 1% among the general U.S. population. Much of the development occurs during puberty due to evolving hormonal shifts and neuroplasticity changes. Despite this, the knowledge of what parents with autistic children know about epilepsy remains limited. In many circumstances, family members are bombarded with new information and regulations to follow from neurologists after a near-fatal ‘grand mal’ seizure. Among the ASD population, many suffering from epilepsy are classified as ‘Level 3’ or require substantial support daily.

Unfortunately, this classification is accompanied by difficulties in language development. Although the inclusion of Augmentative and Alternative Communication (AAC) devices along with the intervention from both speech pathologists and registered behavioral therapists (RBT), is helpful, limitations persist in accurately conveying epilepsy as a neurological condition. Many of the symptoms, such as strange tastes/smells, dizziness, déjà vu, auras, and numbness, cannot be communicated sufficiently, leading to immediate safety risks and loss of bodily autonomy.

Consequently, family members and healthcare professionals must be vigilant at all times, reading nonverbal cues like fatigue or behavioral changes, including elevated anxiety and aggression. It can be frustrating among family members when not knowing if the visuals/audio in a specific video trigger the onset of a seizure. Given that current intervention methods are reactive only after symptoms appear, there is a clear need for preventive measures beforehand. This is due to the growing lack of self-advocacy and inevitable caregiver burnout.

When speaking to your sibling with Autism, do not begin with the medical term ‘epilepsy’ as a complicated term starts the conversation with confusion. Instead, initiate by describing symptoms in simplified form, and relay the parts of the body with concrete visuals. An example of this is teaching fatigue: you would start by correlating the feeling of tiredness with an individual’s head. This is supported by the use of flashcards that illustrate the brain and corresponding actions, such as a person sleeping.

In addition to providing a visual sequence that maps a seizure protocol, it reassures your sibling that when their body feels different, a trusted adult will help, allowing their body to feel safe again. By exploring how epilepsy affects the body using the visuals stated before, you can then instruct them on how to notify others. Given that AAC device phrases can be limited, conveying simple phrases like “I need help” to a trusted adult reduces the inevitable fear. As you incorporate this into your daily routine, be sure to reiterate that lying down with head padding when experiencing symptoms is their designated ‘safe place’. To reduce any feelings of increased anxiety (which in some aspects can form a cycle where anxiety triggers seizures and vice versa), encourage verbal or body language that normalizes asking for assistance.

Although this requires a comprehensive approach, the initial step involves educating the ASD community and their respective families on how to recognize signs. In some cases, family members dismiss petite mal or ‘absence’ seizures that are characterized by a sudden or quick lapse in awareness – this blank stare is often mistaken for ADHD, a common co-occurring neurological condition. Providing epilepsy education and safety planning in an accessible format empowers caregivers with the confidence to respond effectively. By doing so, we can maintain trust and reduce potential trauma during seizure events.