My son has autism. He’s 22 years old…which obviously means I was a baby when I had him. In many ways, I was a baby when he was born…blissfully naive and pointedly focused on nothing more complicated than play dates and diapers; preschools and summer camp. Never in my wildest dreams did I think the lion’s share of my adult life would subsist focusing on meltdowns, medications, behavior modification and an endless stream of doctors and therapists.
My son is considered to be high-functioning…he’s verbal, sweet and oh-so-childlike…with his own unique perception of his world. He moved six months ago into a group home, needing more daily supervision than I could possibly provide. He couldn’t spend his days cooped up alone whilst the rest of us ran out the door each morning to live our busy lives.
I'm ashamed to admit that I was relieved in a way...this was to be my opportunity to experience "normal". I could finally search for full time work and know that my son was with people who could handle the unique challenges that come with this often-misunderstood disability.
It was the third week in April when I got the first call. I was walking through the parking lot of a local office supply store at around 6pm, tired from a long workday and anxious to get home. The social worker on the phone informed me in a voice lacking emotion that my son was returning home from a social-skills group when he flew into an unexpected rage. They weren’t sure what set him off but staff had been forced to perform a maneuver that left him pinned to the ground, bruised and bloodied. They’d then called for an ambulance and had probably just reached the hospital, where my son would be confined to a bed in the psychiatric wing of the ER until he could be “evaluated” by the psychiatrist on staff.
Evaluated? For what?? He. Has. Autism.
As I stood at the trunk of my car, the bags containing my recent purchases all but forgotten at my feet, I tried to speak but it was difficult to form thoughts, much less words. I felt the ache in my throat and that familiar burning in my eyes…soon the tears would come. Before I could respond, the social worker added, “Oh and before they were able to subdue him, your son deliberately punched a staff member in the jaw and may have broken it. Our staff member is going to the hospital and plans on pressing charges.”
The next few moments went by in a haze. I remember vomiting…and frantically scraping my hand on the rough concrete of the parking lot as I grabbed for my dropped cell phone…and I remember having the crazy thought that I would bear a fitting scrape of my own to mark this horrific day. I was gagging and sobbing when I brought the phone back to my ear. My son had flailed out before when overwhelmed…but had never intentionally hurt someone.
“Is he going to jail? What hospital? Oh, God,” I sobbed. The social worker went on to explain that charges would eventually be dropped, as my son would be deemed unable to understand the charges against him. “Then why would someone press charges against him? I don’t understand this!” The tears coursed unchecked as I threw my bags into the car and took off for the hospital.
The confusion increased upon reaching the ER where my son, who simply lacks the emotional sophistication to lie, was horrified to learn that I’d been told he’d struck and injured someone. To this day, he swears it didn’t happen…and I believe him. Two more harrowing incidents took place in the weeks that followed…both involving trips to the ER for “evaluation”. Each “evaluation” involved a harried hospital psychiatrist’s drive-by assessment after less than five minutes of actual face-time with my son...akin to reviewing a movie when all you’ve seen is the poster in the lobby of the theatre.
I can’t sleep…my thoughts race. What do I do? He can’t be here alone; I need to work…I can’t lose this job. I have to help him! My baby…my sweet boy…the rest of my life…this will be the rest of my life. Guilt overwhelms me…it’s not about me…it’s about him! I weep…and I have never felt so alone.
When someone is physically ill, people will say, “How is he doing?” That doesn’t happen with autism. People don’t know what to say. I get that.
I turn in imaginary circles…trying to find answers to a question that has tortured me for 20 years: Can anyone help my son? Medicines…side-effects…therapies…doctors, doctor, doctors. No-one seems to understand my overwhelming desire to come home from work, dive into bed and pull the covers over my head. I should be working…should be writing…should be on the phone every spare minute looking for answers…yet I glance longingly at my bed and learn to live with the familiar burning of fresh tears yet unshed.
“Normal” eludes me…nightmares consume me. The sound of a phone ringing fills me with dread. Autism is forever…it forever changes those who must live with it and it doesn’t care if you’re tired or frightened or feeling alone.
I know I’ll keep trying to help my son…will undoubtedly advocate for him till the day I die. For right now though, I’m so very weary. Tomorrow is another day…it’s bright with possibilities and that fills me with hope.
I hope for the strength...to step away from the edge.