Guest Post by Amanda Diekman
“I feel like someone died.”
“I can’t stop crying.”
Many parents of autistic children grieve their child’s diagnosis like a death, the death of the child and the life they dreamed they would have.
It puzzles me that they rarely describe it as a new birth, the birth of a new autistic child, fully alive to love and cherish.
My son and I are diagnosed as autistic within 4 months of each other. Him at age 6, me at 38. His diagnosis feels like coming home. After suppressing my hunch that this incredible boy is different, categorically different, than your “typical kid,” I am overjoyed to rediscover my intuitive connection to my child.
I did know him after all. And now there is a name and a community to help us connect with this essential identity. I tell him right away that he is autistic and that I am too. It sounds like this:
“Hey bud! Remember when we did that brain testing and played games at Duke? Well they’ve confirmed what we already knew—you’ve got a super cool brain. The way you think and learn about the world is different than many other people, and guess what? I’ve got that kind of brain too. There’s loads of other people like us, we call ourselves autistic. Would you like to meet some of them with me?”
He does not look up from his tablet, barely resonating with the impact this identity will have on his life. He perks up when I mention that there are others like him, already aware that most kids feel different. The idea of feeling the same makes his freckly face light up with excitement. I promise that we will find these other kids and make friends with them. His blue eyes twinkle.
Our twin diagnoses exist like a funhouse mirror. Two identities, freshly bestowed. A reflection, but distorted with the warp of so much time. I see my son, wiggly with excitement and wondering when he will get to meet these new friends—right now??—and I wonder if I will find sameness and friendship, too.
I wildly wish I could trade places with my 6 year old and do it all over again.
While my son’s diagnosis brings the euphoria of fresh possibility and discovery, mine initiates a season of intense grief. For weeks I live in the past, retracing hundreds of steps, ancient interactions, a lifetime of wandering in darkness. All the days of believing that no one was like me, of writing “why am I like this?” in my journal, of contorting my personality to best approximate the people around me.
I plant my new identity like wildflower seeds flung backward into my memories. I whisper, “I am autistic,” “I am autistic,” each assertion a planting. My yield is grief. “What if I had known?”
I grieve for my younger self who did not know her own identity. I grieve for the years I felt isolated from community. I grieve the mask I crafted, day after day, hiding my real self. I grieve the missing support, the incredible effort I put in, alone.
I am overwhelmed, in a fog, ghosting through my days. I remember the psychologist who did my autism evaluation’s suggestion that when feelings overwhelm me, I could set a timer and give myself permission to feel it intensely, knowing it will end. But I don’t know how to set a timer on this grief.
I utter the words “I am autistic” aloud to a stranger. It’s a sterile doctor’s office room. I’m here because the wax in my ears is making it hard to hear anything, adding to the sense that I’m alone in a cocoon. As I sit, waiting for the doctor to come check me out, I decide to tell her my new truth.
“How have things been since I last saw you?” she asks, fingers poised over the keyboard to codify my truth into spreadsheet and database. As soon as the words are out, I feel relief. It felt ordinary, a piece of pertinent information to add to my file.
I recall the bizarre mundanity immediately after I gave birth to my first son. In the wake of 14 hours of powerful, grueling natural labor, I finally held my baby in my arms, weeping with relief and joy and basking in the miracle of creation. Meanwhile, an inexperienced young doctor went about the work of afterbirth and repair, asking clinical questions and probing my body. I wanted to ask: Don’t you know you are witnessing a new birth, a new human in the world??
A furious flame of self-love licks through me, leaving me seared. As I sit in the doctor’s office, a voice inside me screams to life. I exist! I am here! I have been here all along. I will not be silent anymore, she declares, my pure-hearted inner truth warrior, neglected but courageously persistent.
These twin diagnoses create space for a rebirth in our family. “I am remaking the world” becomes my new refrain. As we accept ourselves, we create a world together where difference is celebrated and specific support needs arise without shame. We are our own support group, a safe place to fumble through and learn together. Our family is a new family. Our world, a new world. As we are reborn, we transform our world.
Still I watch my grief like I watch the waves at the beach, rolling in and out, endless. And then slowly, like the changing of the tides, I begin to look forward instead of backward. My grief settles into a deep knowing. I have always been autistic.
I have been a radically unsupported autistic woman, unknown to myself and isolated from my community. Now I will be seen, known, and surrounded with support. I imagine years from now, rich with self-knowledge and confidence, I will look back on this grief and I will nod, knowing I needed to pass through these waters to discover the other shore.
After several months, our big day has come. We’re at the park, our first playdate with neurokin. I watch my son’s eyes sparkle while wildly battling a brown haired boy with a stick, as I sit chatting with his mother, a new friend I found through a parent group for neurodivegent kids. This is my first openly autistic attempt to make an adult friend. There is no small talk. Instead we exchange stories of the hardest moments from our past year, of surviving mental illness and of self-discovery.
I feel radically happy. I do not wish to switch places with my son. I am proud to be me: nearly 4 decades in and seeing the world like a child, every experience rich with new discovery. I celebrate this moment as a new birth—a messy, agonizing, and grueling labor, but also a joyous, delightful, and powerful new beginning.
I am here, and I am ready, beginning a new chapter in my one, wild and precious autistic life.
Amanda Diekman is soulful presbyterian pastor, spiritual director, and autistic contemplative. She lives in her favorite city in the world Durham, NC, with her favorite humans, a husband and three young humans. They live in the North Street community, an intentional residential community with neighbors of all abilities.
While she rarely does well in complex social dynamics, she loves the complexity of the spirit and the complexity of simple questions. Amanda comes alive while woodworking, doing yoga, walking at the beach, and snuggling her kids. You can find her writing at amandadiekman.net and on Instagram at simple.soulful.amanda.