Fiona’s son Elijah was diagnosed with autism as a toddler and epilepsy at 9. From the first seizure in 2021 to a major two-hour episode in 2024, Fiona shares the challenges of medication, communication, and hope for the future. Her story shows resilience and the need for better understanding of epilepsy in non-verbal autistic children.
Family Life and First Diagnosis
Fiona lives in West London with her husband, daughter Bella, son Elijah, and their Husky, Emrys. Elijah was diagnosed with autism just after his third birthday.
He’s non-verbal, but very independent. He taught himself to read and write and generally only needs to be shown something once and he’ll take care of it himself.
The First Seizures
December 2021 changed everything.
Elijah had his first seizure after eating ice cream. He was awake but not moving. Then he started shaking. I called an ambulance.
By April 2022, a second seizure led to emergency medication: buccalam.
We were told to wait five minutes, give the medicine, then call an ambulance.
In May, Elijah had another seizure at school during a trip.
Diagnosis and Medication Struggles
In August 2022, Elijah was diagnosed with epilepsy.
The paediatrician said he’d had too many seizures, and they were too long.
He was prescribed liquid medication in January 2023.
Every time I gave him medicine, he spat it back in my face. It smelled pleasant but tasted awful. Autism makes sensory issues harder.
Despite creative attempts, Elijah never reached the full dose.
By August 2023, he stopped taking it. We were waiting for another seizure to happen.
Major Seizures and Turning Point
In February 2024, Fiona met the epilepsy team.
It had been over a year since the last seizure so we agreed to wait and teach him to take tablets.
But in June 2024, Elijah had a major seizure lasting over two hours.
They didn’t think they could get him out of it.
A month later, he had another seizure at school, likely managed faster with Buccalam.
After that, Elijah started taking tablets.
We practised with melatonin first. Now he takes his epilepsy medicine every day. Five tablets in the morning and five in the evening.
Living with Uncertainty
Fiona still doesn’t know if Elijah can sense seizures coming.
Maybe that’s why he takes himself to bed. He can’t tell me how he feels. That’s hard.
Hopes for the Future
In May 2025, Fiona left her corporate job to focus on Elijah’s development.
I want to help him communicate so he can tell us when he’s not feeling right. Maybe learning about his condition will help. I’d love to work with Young Epilepsy and connect with mums in similar situations and also with young people that can talk about their experience so I can learn how best to help Elijah.
Her message is clear:
We need better understanding of epilepsy in children with non-verbal autism. Families like ours need support.
