By VBS

The day before it happened, I had taken my 11 year-old, severely autistic son ice skating for the first time. The outdoor rink had lighted trees (a favorite interest of his), and fake snow falling from the roof overhang. Given his exceptionally good balance, love of roller skating and natural athletic abilities, I knew he’d do well on ice skates—but how would he do with the music, crowd, and other unknowns that could send him spiraling into a violent meltdown?

I got my answer within 30 seconds—he loved it! Holding my hands, he laughed and pushed to move faster across the ice. I asked him if he would like to come back, he said yes, and the following day we did.

I picked him up from his group home and noticed he was on edge. My gut told me to change plans, but I didn’t. I still had the picture of the rink in my head, and asked him if he wanted to go. He said “skating,” so I proceeded to drive there.

We were on the ice for less than a minute before he started seeking out children and adults to hit them. That’s when meltdown number one occurred. Thankfully, an EMT approached, and, between him and my skating skills, we were able to get my son off the ice and out of his blades, now being used as weapons as he attempted to kick me in the head.

But the worst was to come.

I waited for him to calm down before we drove off. I gave him soft sensory toys, and asked if he was hungry. No response, which usually means no. I gave him a cup of water, which he proceeded to throw across the car. After a while, he grew calmer and I started driving. As I’m getting onto Highway 101 in Palo Alto, he suddenly unbuckles his seat belt, takes off his autism/seizure helmet, and begins to pound his face into the passenger side window.

I know this routine: switch on the emergency lights, pull over NOW, stop this beating he’s inflicting on himself! I intervened, tears forming in my eyes, but trying to steady my voice to calm him. He stopped momentarily, and then I knew what’s next. He’s coming for me.

Like an enraged animal, he pounces his entire 61-pound body onto my head, grabbing my hair with both hands and ripping out clumps only after he repeatedly bangs both of our heads into one another. He does this while climbing into the front seat of my car, using his feet on my neck as his kicking post. At this point I realize I am losing the ability to stop him, and I start screaming out of fear for both of us.

“He pounces his entire 61-pound body onto my head, grabbing my hair with both hands and ripping out clumps only after he repeatedly bangs both of our heads into one another.”

Will he knock me unconscious? Will he give me another concussion? Will he run onto the 101 right now? He climbs into the back seat, and at this moment I see a California Highway Patrol car pull up behind us. I’m so relieved, and yet don’t know what the officer will be able to do, other than provide a momentary distraction to my son who loves police officers.

By this point, my son and I were sitting in our respective seats, bleeding, disheveled, and crying. I explained what was going on, and, thankfully, the officer was understanding and offered to call an ambulance or wait with us until I felt it was safe to drive, Then he would escort us back to my son’s group home. I opted for the latter, as going to the emergency room would only aggravate the situation at this point. We made it back, and survived another day.

What do you do when the person you love more than anything else in this world —the beautiful boy who loves to dance and snuggle—becomes the person you fear? I am a mom not just to him, but to another child with autism as well, so I must protect myself, and my parenting motto is grounded in a sense of overwhelming responsibility— “don’t ever die, and don’t ever become a burden.”

My younger son about whom I write here is the more severely affected, and the self-injury and violence towards me has escalated exponentially in the past year. Medical practitioners attribute this nightmare to the start of puberty, but none of them have truly been able to help. Medication has been somewhat helpful, but only for a short period of time and then he’s back to square one.

I need the medical establishment and our greater community to understand the severity of our situation. I am simultaneously afraid for my son and afraid of him. He desperately needs relief from the root cause of these attacks, and so do I. But from my experience we have not made any progress. No one can tell me why my children have autism or their co-morbid medical issues. The interventions have been largely ineffective. And in the meantime our suffering, for us and for countless autism families like ours, is incalculable.

“And in the meantime our suffering, for us and for countless autism families like ours, is incalculable.”

In addition, it is almost impossible to find information about self-injury and violence towards primary caregivers from autism organizations. From an emotional standpoint, it is the most soul crushing situation I have ever gone through, and yet it seems we must suffer in silence.

VBS is a mother of two autistic children. She lives in the San Francisco Bay Area. She would like to stress that her son has no control over his actions and that all statements are made without judgment.