I was once you. I once sat on the couch while a psychologist told me my son, on whom the sun rose and set, had autism. I don’t remember any of the words said to me after that — but I remember the room, where the sun was in the sky, and my desire to run from the clinic as fast as I could so I could be alone.
I was completing my doctorate at the time, working in a children’s clinic in another state, away from my family and friends. It wasn’t like I didn’t know what I was looking at. I knew all the signs. I had to know them in order to appropriately diagnose other parents’ children correctly. Day after day, I lied to myself – “He’s just smart” or “He’s unique,” I would say. Suddenly though, I had no story to tell myself. My explanations fell flat in the face of him cowering under the kindergarten table, hoodie over his face, screaming, “Don’t look at me!” I could not explain the word-for-word infomercials he scripted when anxious, or the inexplicable meltdowns where I found myself restraining him so he wouldn’t hurt himself. I wanted to hold him, rock him, soothe him — but he didn’t want to be touched. The confidence I felt at work dissolved when I couldn’t reach my own child.
Don’t get me wrong. It was always hard to deliver painful diagnoses to parents. I was empathic, sensitive and supportive, and I wanted nothing more than to truly help the families I served. But something fundamental changed in me that day — I got it. I understood on a level I never before knew existed. Autism wasn’t known by words in a textbook, it was how it felt in a relationship. The first autism diagnosis I gave after that was the mother — not the doctor — holding back tears, helpless in the face of my own emotions. In my defense, the diagnosis of my precious boy was handed to me as though it were a terminal illness, with all the hopelessness such a pronouncement would bring.
Thus began my own journey — the journey I have been honored to begin with hundreds of the most amazing individuals to ever cross my threshold. I immersed myself in the world of autism, not wanting to only know but to truly understand. I humbly accepted that I didn’t and would never have all the answers to something so complex, but I was committed to seeking what just might work for any child, adolescent, or adult. I found the brilliance of hope in the courage of my people, my “village,” and I discovered that the simple joys of having a child invited to a birthday party, developing a friendship, going to a dance, having a boss, a partner, a child were all possible. The search for the ability to experience joy and peace were far more meaningful than any superficial accolades.
That brings me to today. Today, when you sit across from me, holding your breath, wanting to know the truth while wishing you could be somewhere else. I have administered every test and measure necessary so that I, to the best of my ability, understand your child, your family, your dreams, your fears — there’s no room for cookie-cutter assessments here. I am not the person I was all those years ago. Autism doesn’t frighten me anymore; rather, I embrace the absolute treasure found in every person with autism.
But there you are. I see you — I feel what you’re feeling. I have grown to know you through this process and to understand your vulnerabilities, your unwavering love for and acceptance of your little one. You feel alone and beat yourself up for not always knowing what to do, for waiting too long, for your imperfections. I won’t lie, I want to jump in and rescue you, say, “Let’s wait a year and re-evaluate.” If I do that, I am hurting you, delaying the process you are going to have to go through. I’m going to tell you the truth. And then, if you let me, I will be honored to walk beside you on this road — yours and mine — and share your journey.
Our children with autism can teach us the greatest lessons. Someday, I hope you will tell your story to another parent, about the day you sat where they are sitting, and all you have learned on this journey.
The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.