Autistic identity: A new birth, not a death

“I feel like someone died.”

“I can't stop crying.”

Many parents of autistic children experience their child’s diagnosis accompanied by intense grief. Parents describe this grief like a death, the death of the life that they thought they would lead and the death of the child 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 M and I are diagnosed 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 last week? 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 nods along, as he usually does when I’m enthusiastic about something that isn't interesting to him, barely resonating with the impact it may have on his life. He perks up when I mention that there are others like him. It’s clear that he's already aware of the reality that most kids feel different than him. 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. 

These twin diagnoses exist like a funhouse mirror. A reflection, but distorted with the warp of so much time. Two identities, freshly bestowed. 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. Will I find other adults and make friends with them? 

I wildly wish I could trade places with my 6 year old and do it all over again.

While M’s diagnosis brings the euphoria of fresh possibility and discovery, mine initiates a season of intense grief. For weeks I am barely present. 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. With the wind of this knowledge, I whisper, “I am autistic,” “I am autistic,” each assertion a planting. My yield is grief. I am plagued by the simple question, “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, 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. I stare at those fingers, poised to record my admission, codifying 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 continue telling strangers. It feels so much easier than telling family or friends and facing their expressions as they absorb new information after 2, 3 or 4 decades. Or worse, facing their invalidation or disbelief. I join support groups on the internet for late diagnosed autistics where we talk openly about our experiences. The most common line of questioning sounds like: “Does this happen to you? I always thought this was just me.” After a lifetime of not knowing, we are re-learning ourselves. Discovering our native tongue after a lifetime of fumbling through a foreign language. 

I talk to my children about autism and ADHD every day, making these basic facts of our brains an easy conversation topic. Since they were little I have said, “There are lots of ways to be a boy,” and now we expand to include: “There are lots of ways to be human.” Different doesn’t mean wrong; it is just different, we say. We are our own support group, a safe place to fumble through and learn together. 

These 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. Our family is a new family. Our world, a new world. 

My children are fertile soil for these seeds of radical acceptance and as we plant them deep, they immediately begin to grow. In a world that says to a misbehaving child, “What is wrong with you?”, we say “What do you need right now?” In a world that sets benchmarks for performance based on age and grade, we ask, “What are you working on? What are you proud of? How can we help?” Specific supports like ear plugs, a weighted blanket, and household quiet hours make my life easier. I narrate this to my kids: “My system gets overloaded, and sometimes I need help managing it.” 

My grief finally settles into a deep knowing, and slowly, like the changing of the tides, I begin to look forward instead of backward. I imagine years ahead, rich with the knowledge of my identity and full of confidence from getting the support I need, looking back on this grief. I will nod, knowing I needed to pass through these waters to discover the other shore. Grounded in my one, wild and precious autistic life, I will celebrate this moment of new birth—messy, agonizing, slow, and effortful, but also a joyous, delightful, and rich new beginning.