By Holly Riley TACA Co-coordinator Los Angeles/San Fernando Valley
In May of 2005 at the age of two, my son, Quinn, was diagnosed with autism. We didn’t know if he would ever speak. For that matter, we didn’t know if he would ever do anything but tantrum, cover his ears and spin things in the corner. Those were dark days. There is nothing glamorous or good about watching your child suffer. While we celebrated Quinn and his accomplishments, we never celebrated autism. We worked very hard to help him get better.
See Quinn at diagnosis in this short video https://www.youtube.com/watch?v=yWL_MpiOxgg
Flash forward to 2011:
After thousands of hours of therapy and dozens of medical interventions, Quinn was in Washington, D.C. The good doctors at the National Institutes of Health were studying him because he was so special (1.) They confirmed something we had dared to dream about: he no longer met the criteria for the autism diagnosis. But while they were at it, they discovered his epilepsy in an overnight EEG. He was having almost constant spikes of epileptic activity both awake and asleep (read about seizures reference 2.)
So we pressed on with medical interventions. Along with the epilepsy, Quinn was suffering from anxiety due to an autoimmune response to a bacterial infection. We worked with his doctors and used various treatments to calm the immune and neurological systems. After years of failed anti-epileptic medications and multiple abnormal EEGs, our neurologist agreed that we should wean him off of the medication and get a new baseline EEG.
Flash forward to 2015:
Quinn had his first-ever clean EEG. There were no spikes of epileptic activity and no seizures – all normal for 24 hours, and all without any anti-epileptic medications.
Expectations & Quinn’s Superpower
Let me tell you, when people hear the word autism, they tend to have expectations. They see Quinn, who looks so normal, but they know he’s not, and they want to know-What’s his superpower? Really, nobody literally asks the question, “What’s his superpower?” Instead we get math and science games as gifts from family members. We get recommendations for technical institutes from other parents. Professionals ask if he’s musical (they actually mean, is he a musical prodigy?).
The truth is, those science and math games often go unopened and get donated to charity after they collect some dust. They just don’t interest him – he’s too busy playing with his action figures and video games. He’s barely turning 12, so we’re really focused on middle school right now, not college. And, while he is musical, the only instrument he plays regularly is his iPad.
There are a lot of things he can’t do.
He can’t tell you what day of the week it was or will be on a random date. He can’t count hundreds of items in one glance or draw an entire city after seeing it just once. He can’t do big sums in his head. To be blunt, he doesn’t have any cool party tricks. He’s pretty much like most twelve year old boys. He has a great memory for topics that interest him, he’s shy around pretty girls, and he’d rather watch YouTube videos or play with friends than go to school.
But I know you still don’t believe me and only kept reading to find out what Quinn’s superpower actually is, so I will tell you. Recovery. Quinn has recovered from autism and epilepsy.
I can’t imagine a party trick that could top that.
Quinn is my Autism Superhero.
Want even more Quinn? http://ff.tacanow.org/holly-ford-riley