Autism Erased My Future

The day autism erased my future

Last summer, I threw a funeral for my future.

Twice.

I was preparing to join my then boyfriend in the Peruvian Amazon and live a life of adventure and mystery together. I thought my three-year-old son would come with me for part of the time… His father and I could surely work out a custody arrangement since we communicated and got along well post-divorce.

I’d done everything right; we had ended our marriage beautifully in spite of family histories rife with pain and failures. My new relationship felt like kismet. I had faith in the universe. My mouth salivated at the flavor of my impending happily ever after. It seemed we were all invincible.

July days marched after each other like blistering tin soldiers.

And then, one ordinary morning when I expected nothing but strolls and sandwiches, my dreams were dealt a crushing blow.

Our little boy was diagnosed with autism.

I held it together through the evaluation. I smiled and nodded encouragingly at all the right places.

I put on a brave face and stood vacantly next to my ex’s car; our son on my hip, white hot asphalt pulling thin streams of sweat down the backs of my knees. Robotic, staccato words fumbled out automatically… “No matter what they call him, he’s still our same little boy who we love. Labels aren’t anything but a way for us to get help.” But as those supposedly comforting words tumbled out numbly, I felt like I was being dragged down a street full of broken glass, naked.

My ex looked shell-shocked. Our attempts to reassure each other were transparently ineffective as we parted ways. I clicked the belt on my son’s car seat—his eyes turned up toward me the same as always, and yet I wondered who I was even looking at.

Somehow I had been inserted into a film of someone else’s story.

I drove home in my steel-framed isolation tank and wondered who else on the freeway had just been crushed. Was there hope for any of us?

Life doesn’t stop when the universe kicks you in the gut.

After putting my baby boy down for a nap, I spent a solid afternoon grieving the death of my dreams. My son had lost nothing; he had no idea of anything but the present moment (which to him was perfectly fine). Meanwhile, I felt like I’d lost everything.

I raged and stormed. I asked WHY. I tortured myself with fiction about what would happen next. I assumed so many things…

I assumed my son would never get better.

I assumed my boyfriend would run. That he would choose his life of adventure over my ordinary chaos.

I assumed the life I wanted was over before it even had a chance to start.

My mind went from a nuanced and vibrant thought palette to the black and white land of never and forever.

I could never have dreamed that my ideal future would be erased to make room for something even better.

You have to go through hell to understand heaven.

At the time of my son’s diagnosis, I didn’t understand the gift it would become. All I could see was the evaporation of my plans, a future of being held prisoner by my child’s walls of overwhelm.

I could feel myself disappearing; shrinking into grief and despair.

But, some part of me refused to vanish so easily… Besides, I didn’t have the luxury of running away, no matter what tempting thoughts bubbled up.

I sat up in bed with a sudden realization: My son’s autism wasn’t my burden to bear. Perhaps it wasn’t a burden at all. I walked into my tiny dining room, his makeshift nursery, and watched him calmly breathing… in and out. In and out.

His peaceful breathing slowed my own, and I realized why I hadn’t recognized him behind his eyes…

I couldn’t see him as my greatest teacher.

My son, my teacher

Autism evolved into an unexpected shamanic-style initiation. I vowed to learn from him instead of resent him. And in the year+ since his diagnosis, he has gifted me not only with wisdom; but with a life far more amazing than the one I thought I’d lost.

First and foremost, he has taught me to stop making assumptions.

I’d read Don Miguel’s The Four Agreements when it was first published almost 15 years ago. I knew about the danger and ineffectiveness of making assumptions.

But, knowing the worthlessness of a habit and actually changing it are two very different things. It often takes a catalyst to force us to change our ways.

As the day-soldiers marched on, I saw how often my assumptions were being proved wrong.

My boyfriend didn’t run. His mother happened to be a neuroscience researcher at AutismSpeaks.org. He had been exposed to autism and other neurological disorders since he was born. He didn’t see a death sentence. He saw two facts. One: He loved me, and therefore loved my son. Two: My son was autistic. Great! Now some of his challenges had an explanation. And probably, our plans would change. So what? My partner was much more flexible and loving than I thought possible.

I’d assumed that autism would negate my desirability as a partner. But, as I opened my heart to my son and talked about it with my boyfriend; he just fell deeper in love with me; even from across the world. Today, we are married; dyed-in-the-wool inseparable soul mates.

Autism + our family

I’d assumed that my son’s condition would worsen. It does happen; but it didn’t happen to him. He actually improved thanks to 5 days per week of early intervention therapy. Today, he seems much like any other toddler-aged boy; albeit a uniquely affectionate, analytical one. I can see now that autism is just the lens to his worldview; it’s not his identity.

I’d assumed that my life was effectively over… That I would never again have the time or luxury to nurture my own dreams. But instead, he’s taught me that:

I am the center of my universe.

And if I let that universe fester and die, then our household falls apart. Not only can I pursue my dreams, it’s imperative that I do.

How can I teach him to grow up and become anything he wants to be if I don’t forge that path first?

I can’t, so I do.

Since his diagnosis, I have dedicated my life to love. I have watched the self-constructed barriers between me and my desires crumble.

My son has taught me that no force on earth can match the power of a divinely inspired human; not autism, not divorce, not money; nothing.

Tweet it: “No force on earth can match the power of a divinely inspired human.”

My son inspires me to create the legacy that he deserves.

My future has been erased by autism; and I am grateful beyond words. I have learned that if I have no expectations of what it holds, then the most amazing thing happens: The future that unfolds minute by minute is paved with gold.


Some resources for those with kids on the spectrum:

Autism Speaks Resource Guide
Career Assistance for People with Autism
National Center for Autism Resources & Education
AutismNOW Transition Planning
Aquatic Therapy for Children with Autism

3 confessions
  1. Caren

    I’m Dr. Caren Rich. I bang drums, chant and raise money for gardens and music programs. I am a student of shamanism.

    You are awesome. Check out the movie The Horse Boy & Rootlight music. Julie Sando in Oceanside of AutisticallyInspired.com

    I teach Autistics for the Los Angeles Unified School District. I am an advocate for Weinfeld Education Group.That’s a major confession. We do all sorts of shamanistic practices in my classroom unless an administrator walks down the hallway. My grown children were on the spectrum. After 28 years, you are inspiring me to walk a different path. People call me The Autism Shaman and The Potion Doctor. The universe is speaking. Love now.

  2. Gale Roy

    Not a confession; a big THANK-YOU . You have put into words the emotions that family and friends go through when someone is diagnosed. You go through a rollercoaster of emotions. You have validated the emotions we all go through. You are an inspiration. Love.

    • Lola

      You are so welcome, Gale! It continues to be a roller coaster of emotions as time goes on, but the outcome for my son has thus far been very positive. I look forward to what unfolds in the coming years for him and for our family. Best of luck and much love to you and yours, too!

Care to confess?