|Photo © Ivo Dimitrov | Flickr / Creative Commons|
[image: Illustration of a human brain, in profile,
made of colorful cogs in various sizes and shapes.]
[Content note: This post discusses suicidality, mental health, and death.]
In the early 1990s, I was engaged to a man with epilepsy. He had tonic-clonic seizures and he was a big guy, so I was always alert to the possibility of an episode. I knew there were stores we couldn’t shop in, and roads I couldn’t drive down. I caught his body and lowered him safely to the ground more times than I can remember. I guarded him from the pressing crowd of curious onlookers when he came around after a public seizure. And I worried, feeling helpless, when his medication levels were off, and he had seizure after seizure.
I can’t know what it is like to have epilepsy or to have a child with epilepsy, but I can draw on the empathy I felt for what Bear went through. I'd also like to put a call out to other autistic writers: we need more essays to help other autistics with epilepsy and parents of autistics with epilepsy. (I will write what I can—we need you to write what you live.)
Epilepsy organizations and doctors have drawn attention to the interplay between autism and epilepsy on many websites, and in many books. The Epilepsy Foundation has a page on their site titled, “Epilepsy and Autism: Is There a Relationship?” (The short answer: yes, there is definitely a relationship between epilepsy and autism.) The Epilepsy Foundation underlines that fact on another page for medical professionals, titled “The Complex Relationship Between Autism Spectrum Disorders and Epilepsy,” which says, “There is a strong association between autism spectrum disorders (ASD) and epilepsy.”
While 1% to 2% of typically developing children are diagnosed with epilepsy, it is estimated that as many as a third of autistic children have epilepsy. The Epilepsy Foundation calls that “(a little) more likely to have epilepsy” but I think a jump from 2% to 33% is a far more significant shift than “(a little).” Not only do autistic children have a much higher rate of epilepsy than the general population, but a 2011 study of children with epilepsy found a 5% rate of autism (compared to the 1% to 2% range of autism in the general population) among children diagnosed with epilepsy (and mentioned an older study that found a 14% autism rate among children with epilepsy). Additionally, an estimated 25% of autistic people develop a seizure disorder at puberty, after being seizure-free or otherwise undiagnosed throughout childhood. It is also well-documented that epilepsy is a leading cause of death for autistic people.
The Epilepsy Foundation has stated that, “epilepsy associated with ASD does not change the evaluation or management of seizures,” however the higher co-occurrence rates of epilepsy and autism indicate that considering the two together and talking about how one affects the other is crucial.
Depression and anxiety are so important that I dedicated an entire chapter to them in my last book, The ABCs of Autism Acceptance. I cite research statistics about autism and depression in that chapter such as the British study that found that 71% of autistic children had a mental health issue while 40% had two or more mental health issues. Autistic children have 28 times as much suicidal ideation as non-autistic children.
Add seizures to the mix and those figures take a sharp turn upward. The Epilepsy Foundation reports that 20% of children with epilepsy have thought about suicide. Obviously the combination of autism and epilepsy dramatically increases the risk of depression. After factoring out pre-existing psychological disabilities, the suicide rate among people with epilepsy is twice as high as that among people without epilepsy.
Keep a watch for the signs of depression and don’t be afraid to talk to your child about depression. Remember that autistic people don’t always show the same signs of depression as non-autistic people and often we need depression treatments tailored to us.
Half of all people with complicated or difficult to control epilepsy have psychological comorbidities including learning disabilities, for example the rate of ADHD among people with epilepsy is twice as high as it is among the general population. Many of the traits of ADHD overlap with autistic traits, so this is another place where epilepsy and autism can combine to increase the likelihood of executive function issues.
Many autistic people struggle to regulate our emotions. Emotional regulation can be a struggle for people with epilepsy, too. If your child is autistic and has epilepsy, any burst of rage might genuinely be out of their control. Epilepsy also can cause a wide range of emotional distress. In addition to the situational depression that can come from struggling to control seizures, there is a condition called interictal dysphoric disorder (IDD) that is marked by depression (dysphoric) between seizures (interictal) and worsens when seizures are less controlled.
I spent some time reading public Twitter messages from autistic people about seizures and noticed many comments about depression, anxiety, and anger occurring before and/or after seizures. If your child is autistic you’re probably already used to discerning the difference between meltdowns and non-meltdown expressions of anger. If your autistic child also has epilepsy, you need to watch for epilepsy-related anger as well. Understanding your child’s emotional landscape becomes more complicated with both autism and epilepsy in the mix.
On the Web
- A Guide to Managing Epilepsy in Autism, from Autistica: www.autistica.org.uk/downloads/files/Epilepsy-autism-E-LEAFLET.pdf
- A Review of Traditional and Novel Treatments for Seizures in Autism Spectrum Disorder: Findings from a Systematic Review and Expert Panel: www.ncbi.nlm.nih.gov/pmc/articles/PMC3859980
- Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders by Caren Haines, RN: www.amazon.com/dp/B00A4HPJCI