My husband and I sat across the table from our early childhood special education team and my son’s beloved preschool teacher of two years. This nurturing, creative team had seen us through so much, and now they were preparing us for our son’s transition to elementary school. As the meeting ended, his teacher smiled warmly and assured us, “He’ll do so well.”
Surprised by our silence, she locked eyes with me, raised her eyebrows, and gave a nod of further assurance, insisting, “He is doing great. He is.” I was at a loss for words, managing to squeak out a “Yeah [pause], he is,” as my husband gave me a skeptical look. I think the transition meeting was supposed to be like the release of a beautiful dove, but this one had ended with a disappointing thump.
Søren Kierkegaard, a philosopher, once said, “Life can only be understood backwards; but it must be lived forwards.” That awkward transition meeting moment jarred me from my living forwards—a living that felt more like falling or spinning amidst sleep deprivation, sensory struggles, and striving for knowledge about and some sense of control over autism.
Gradually in his fourth and fifth year of life, my son’s sleep and sensory issues became less intense, our trust in the ECSE staff and services deepened, and we had the support system he needed. So why was I so taken aback by the idea that he was doing well? Wasn’t this what we were working toward? My son was thriving, but I was still mired in fear and fixated on his challenges. I felt left behind. Stuck.
As I reflect on this journey, I recognize that underestimating and ignoring my own needs slowed me down in the natural process of grieving and coming to acceptance of autism. Like most parents, I put my son and his needs first. Spending time, energy, or money addressing my needs seemed selfish and unnecessary. There was so much work to be done, so many challenges to address, after all.
When the autism specialist presented to our ECSE parent group on the phases of grief parents of children with special needs often experience, I was anxious to move on to topics relevant to my child. I didn’t think I had time for self-care and opted to “push through” like I was pulling an all-nighter before a deadline. Somewhere along the way, putting my son first evolved into hiding behind him. When he started making strides forward, I was left exposed and vulnerable. I had to finally face down the struggle with grief that I had been trying to deny.
With the understanding that comes in looking back, I see that I experienced all the phases of grief after we got our autism diagnosis. I remember saying, “He’s just an introverted little boy. He’ll probably be an engineer just like his Daddy” -Denial. I also thought, “How dare they frame my son’s precious first expressions of interest—like his obsession with street signs—as a ‘red flag’ for autism!” – Anger.
I understood that the observations, evaluations, and questionnaires were based on lots of expertise and research, but my emotions—kicking and screaming in defiance—were bigger than reason. But reason won eventually, and I began to accept that my son was on the autism spectrum…and I was hell bent on fixing him.
Just like that, I slipped into the bargaining phase, fully believing that “first we need to work on my son’s challenges and then we can relax, enjoy, and build on his strengths.” Mixing my researcher brain with the idea that I was “my child’s best advocate” felt like an empowering step, and it launched me headlong into “fix-it” mode.
I dove deeply into books and research articles. I peppered our therapists and educators with questions and asked for additional resources. I envisioned myself as an additional therapist to maximize my son’s waking hours. I was exhausted, retaining and implementing little of what I learned and feeling clumsy and uncertain about explaining my son’s delays and our decisions to close friends and family. The harder I tried to understand autism with the goal of “fixing” him, the more a fog settled over me, making my social network and even my son himself feel out of reach. I couldn’t see the forest for the trees or the little boy for the autism.
I’m certain that the depression phase began somewhere in that foggy forest, and it lasted for quite awhile. Maybe one foot is still there, but I am beginning to experience acceptance and the healing that comes with it. For me, moving from “fix-it” into acceptance came about gradually as I walked that spiral path of grief. And true acceptance of autism looks a lot different than accepting the diagnosis. But I’m getting there through connecting with and investing in the autism community and practicing daily acceptance.
I am always mindful of my tendency to slip back into “fix-it” mode—a place where I am emotionally unavailable and feeling guilty about not doing enough. Now, I take a more measured approach to our ongoing therapies and resources. I try new strategies if new struggles arise, but mainly, I try to be present with my family, playing games, and roughhousing. Finally, after a sanity-saving break from reading about autism, I have been reading books and blogs that take a compassionate and strengths-focused perspective about autism.
Hearing people on the spectrum explain their experiences of the world, particularly their sensory struggles, has helped shed light on what my son might be experiencing, giving me a more empathetic view of his challenges and more patience in my response to them. Overall, the past year has been a time of recognizing and celebrating my son’s strengths and finding a healthier balance between intuition and intervention.
I share all this to encourage other parents in their own journeys—especially those who, like me, keep grief at arms length by entering into “fix-it” mode. Our children are not projects. They are whole, complex, beautiful people.
Grief is natural as we let go of our expectations. As autism self-advocate, Jim Sinclair, wrote, “Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.”