Today I’m addressing the question, how common is Epilepsy in Autistic kids? If you follow me on social media, you may know that Sam was recently diagnosed with Epilepsy. He’s almost 11 now, and is classically Autistic. Over the years, he’s added a few more diagnosis to his collection – including Epilepsy, just last month.

Before I get into my thoughts on the question, how common is Epilepsy in Autistic kids, I wanted to share some background…

Sam’s Autism and Epilepsy Journey

It feels like a lifetime ago that I shared my toddler autism concerns on this blog. It was over 9 years ago! Sam was diagnosed as Classically Autistic in December 2013, at just 30 months old. Back then, it was known as “Low functioning Autism”. Since then, Sam has come on in some ways, but remained non verbal and reliant on full support when it comes to many things.

Two of my siblings have had Epilepsy since birth, and although they were never diagnosed, I suspect both are on the Autistic Spectrum as well. Sam’s Dad has never been diagnosed, but we believe he too is on the Spectrum, so there’s a strong family history of Autism and Epilepsy.

Now I’ve gone over our family history, I just want to reiterate that I am not an expert in Autism or Epilepsy. I’m just sharing the stats I found and our family’s experience. Now that’s been said, it’s time to consider the question… How common is Epilepsy in Autistic kids?

How common is Epilepsy in Autistic kids

According to the National Autistic Society, “autistic people are more likely to develop epilepsy than those who are neurotypical. We also know that people with epilepsy are more likely to be autistic than those without epilepsy”.

They go on to discuss who is at risk of developing Epilepsy.

They state that… “Different studies have shown that intellectual disability (ID) is the major risk factor for autistic people developing epilepsy.

The risk for epilepsy in autistic children without an ID is 8%, increasing to 20% in those with an ID.

The risk can be as high as 40% in those with severe intellectual disability. Among autistic children who have IQs above 70, approximately 4% develop epilepsy.

As children with autism reach the teenage years, the risk of developing seizures increases, and continues to increase into young adulthood. Other factors such as gender, regression of language and social function don’t increase the likelihood of an autistic child developing epilepsy.”

So How Common is Epilepsy in Autistic Kids?

Based on what the National Autistic Society say, the stats for Autistic kids developing Epilepsy are as follows:

• Child with no Learning Disabilities & IQ above 70: 4% chance of developing Epilepsy.
• Child with no Learning Disabilities but IQ below 70: 8% chance of developing Epilepsy.
• Child with Learning Disabilities: 20% chance of developing Epilepsy.
• Child with Severe Learning Disabilities: 40% chance of developing Epilepsy.

Based on those stats, Sam had a 4 in 10 chance of developing Epilepsy during childhood. He currently attends a special needs Primary School. Of the 10 children in his class, 4 (including him) are Epileptic and Autistic. I’d say that makes his class pretty textbook!

How did Sam’s Epilepsy Present Itself?

I just want to reiterate that I am not an expert in Autism or Epilepsy. I’m just sharing the stats I found on how common is Epilepsy in Autistic kids, and our family’s experience. I’ve written a full post going into detail about how Sam’s Epilepsy presented itself. You can read that here.

In a nutshell, Sam had a potential seizure or blackout in school, then 2 weeks later, he had a cluster of 5 seizures, each progressively worse than the last. He had a CT Scan that day to rule out anything sinister, and then had an emergency EEG and Echo 5 days later. Those results together all lead to his Epilepsy diagnosis.

How is Epilepsy Managed in Autistic Kids?

Following his diagnosis, Sam was prescribed Lamotrigine to control his seizures. The nature of this medication means he has to be gradually weaned onto it.

His dose is being increased by 5mg per week, until he gets to 50mg per day. Once he’s here, it will be increased in larger increments until he’s on 100mg per day.

Due to the slow weaning process, Sam has been prescribed Clobazam as well. He’s taking this for a few months until the Lamotrigine dose reaches its target.

Sam’s also prescribed 1mg Buccal Midazolam to use as rescue meds. These are given orally, when he’s been in a seizure for over 5 minutes or had a cluster of episodes which total over 10 minutes.

Sam is non verbal, so I don’t know if he really understands why he’s having all of these extra medications. I’m not sure he knows when he’s had a seizure either. That’s the hardest part for me.

I hope this post has given you some insight into how common is Epilepsy in Autistic kids. Let me know in the comments if you have anything to add.

This Leaflet is really helpful when I was first trying to get my head round Sam’s seizures. I forwarded it to the people who needed to understand too. It’s really helpful in understanding how common is Epilepsy in Autistic kids.

Update: 

It’s April 2024 now and Sam’s turning 13 soon. He’s now on 200mg of Lamotrigine twice a day, but his seizures still aren’t fully controlled. I’ve gone into more detail in this post, if you want more information on where we are now.