Approximately 25% of children with autism will experience at least one seizure by the time they reach adulthood. ~ Epilepsy Foundation (also First Signs, National Autism Center and countless others that I don’t have time to cite.)
From 25 to 35 percent of people with autism will eventually experience full-scale seizures. Many others will have seizure-like brain activity, in which there is no obvious effect on muscles but potential effects on brain functioning, such as temporary loss of attention. ~ Science Daily, June, 2011
Until my friend, Tanya wrote about her son, Nigel’s first terrifying seizure, I had no idea. I have other friends whose autistic children suffer from rare and vexing forms of epilepsy, of course, but I’d always (ignorantly) thought of them as somehow being in a different category.
But when Nigel – a child very much like my Brooke in many ways – seized that first time, we all learned quickly that there are no categories with autism and epilepsy. That far too often – at least 25% too often – seizures stealthily lurk.
But we – all of us – need to be armed with information.
We need to know what to look for.
When the neurologist cum God-figure at Children’s cavalierly tossed out the “Well, you were right to come in. A quarter of children on the spectrum will experience at least one seizure by the time they are in their teens,” I wanted to scream. I knew it by then, but to hear it – well, it was different.
I wanted to ask why the hell he was telling us this *after* we’d come in to check on seizure activity. I wanted to ask why, when they handed us a diagnosis and then sent us on our way with a pat on the back and a sympathetic smile five years ago, no one mentioned that perhaps we should keep an eye out for something so, well – huge.
25% of our kids will experience seizure activity in their lifetimes. Good God.
So what do we do?
We do what we always do. We get educated. We find out what to look for. And, more importantly, we look into what factors might be making our kids more vulnerable.
Yesterday, a friend sent me a post that she’d written on the heels of a study released recently by the American Epilepsy Society detailing the unexpectedly high comorbidity rates of Photosensitivity and Autism / Epilepsy. Please read her post HERE. It matters. She has information that we need to know.
This stuff is scary. But information is power. The more we learn, the more we can protect our kids – and maybe even lower those damn numbers.