By Elizabeth North 
In 2015, when my daughter was diagnosed with autism, my life ended—or so I felt. This wasn’t the type of autism parents work through and watch as children flourish, navigating traditional education and eventual life on their own; this was the type of autism that needs support, most likely forever.
Initially, people would pause and say, “You were born for this,” or “If anyone can do it, it’s you,” but in that moment, in that season, I didn’t think I could. There are still days I feel like I can’t. As if autism is too much. There are also moments of elation, when I pause and think, I’d never dreamed we’d be here, while she tries to talk to a family about a baby or a young child and their milestones. In that moment, someone sees her for who she is and engages and accepts her. Still, there are other moments I catch my breath and think, Will she ever be able to… Those moments cause me to pause, reflect, and realize that I wasn’t born for this; however, I am called to learn how to do this.
Autism has infiltrated my life and our family’s life in so many ways. Today, I work in the field, and while my job can be challenging, it’s also my calling. My favorite part of my job is when a mom calls, desperate for help. She may speak with a quivering voice, ashamed of how she feels about a recent diagnosis, or she may even cry, and I am quickly sent back to my own beginnings of learning to accept this diagnosis. I pause and remember our diagnosis day, when I felt numb, hurt, angry, and scared all at once. When we received the diagnosis, I was embarrassed by my feelings. My child was healthy, she was present, and there were worse diagnoses a parent could hear. Because of that, I never felt I could mourn. But mourning is okay and perhaps even necessary. It was okay to mourn the expectations I initially had for my child, my family, and our life.
So, I tell parents it’s okay to feel. It’s okay to recognize this journey isn’t what you wanted. I remind parents there will be days when you smile and relish the opportunity to slow down and see the world differently than other families. There will also be days that nearly break you. And both those scenarios will happen again and again.
I used to say navigating life and raising a child with autism can feel like a marathon. After a few years, I dubbed it an Iron Man. Today, I have another analogy I frequently share with newly diagnosed families: an ocean.
The ocean is my favorite place to be. I watch as waves lap at the sand, sometimes peaceful and in sync with the wind, other times so calm and clear it looks like you could walk out and walk forever in its beauty. Then there are times the ocean is so violent and angry that one wrong step could sweep you away and take your breath in an instant.
The ocean is how I view autism. There are days when there are no roadblocks. The day is clear, like the ocean, as smooth as glass with methodical waves gently lapping against the sand. On those days, my child is able to attend school, and there are no phone calls about behaviors or discord. She may color and play and take her medication without being upset. Perhaps she even uses her own words to communicate her wants and needs and talk to others. When it’s clear, it’s easy to have hope, see a bright future, and plan for it.
Then, there are days when the ocean is a bit unsettled. On these days, it can be exciting and anxiety-provoking all at once. It’s a little choppy. There may be mild aggression. She may try to elope. She may escalate her voice and become unsettled. On days when the water isn’t as clear and the waves are strong, it churns up something inside that causes me to pause, reflect, and sometimes feel overwhelmed. I wonder if this will go on and what caused it. But even on those days, autism can be beautiful. That reflection will often remind me where we once were and perhaps where we are going in this life.
Sometimes a hurricane barrels in, creating a flood of emotions. It can wreak havoc not only on our household, but on other family members and the community at large. On those days, you may find yourself doubled over, weeping for what your child faces, for what your family experiences, and with a fear so deep there aren’t words to express just how you feel. It’s okay to just breathe. Once the storm has passed, you will clean up, and your family and community will rally to help you rebuild—and there is often a calm after the storm.
For a long time, I didn’t allow myself to mourn our autism diagnosis. Instead, I tried to pretend everything was okay until I realized if I felt like this, there was certainly someone else, somewhere, feeling the same thing. Most likely, they stood in silence, afraid to let those feelings surface, afraid they were bad or wrong. But in time, I realized those feelings are valid and real.
Today, 10 years in, we continue to navigate the world of life with autism. Life with elopement. Life with aggression. Life with limited verbal communication outside scripting and echolalia. No matter what ocean we are navigating, one thing has remained the same. When my daughter was diagnosed with autism, I would repeat the mantra: “If I can make this journey easier for one family after me, my daughter’s diagnosis is worth it.” While I am not sure that’s happened yet, I continue to live by that statement with faith that while I wasn’t born for this, there is beauty in autism, and I can do more than survive; I can learn to thrive.
Originally published on the author’s blog
by Joanne Giacomini 
