I am still coming to terms with my son’s autism diagnosis.
I was recently on a girl’s trip. These women know more about my son’s challenges and more about my struggles parenting him than almost anyone else in my life–and yet, because our friendships formed online and we are spread across the country, they’ve never actually met my boy. They only know what I’ve told them.
One of these women expressed some curiosity about whether her child might be on the autism spectrum. She explained some behaviors she observed and questions she had. “I know I should probably go for an evaluation,” she said, “but I’m a little scared.”
Another friend chimed in. “You know, for me, I’ve never wanted to pursue any labels because I think I would crumble.”
I keep thinking about that word. My son has a label, so…should I be crumbling?
The truth is, any diagnosis is challenging. I want my kids to thrive, to be met with love and acceptance wherever they go. This is my biggest fear about my son’s autism diagnosis: I worry that others will pre-judge him and make assumptions about what he is or is not capable of–even people who love our family and love him. It can be jarring to understand that there is something different and unusual about my kid–something that places him outside the realm of “typical.”
Is it hard? Yes. Is it totally debilitating? No!
I will not crumble.
Am I grieving? Yes. A special needs diagnosis leaves us with much to grieve. I grieve the fact that things won’t be easy for my son. I grieve that he often walks through the world feeling anxious and overwhelmed. I grieve over the time we lost to meltdowns, freakouts, and confusion I couldn’t help him navigate. In some ways, it feels like I’m grieving the challenges he might face in the future.
But I’m not crumbling.
The truth is that this diagnosis is giving me the strength, information, and compassion I need to move forward with parenting this kiddo well. We had almost eight years of struggle, challenges, quirks, and questions. And none of that has gone away–but now we also have information. The evaluation we completed on the path toward diagnosis gave us so much information about how our boy’s brain worked: exactly what his strengths and weaknesses were, in specific terms we could use in communicating with his teachers and each other.
I’m not crumbling–I’m rejoicing.
Rejoicing that I now understand better how my son’s brain works. Rejoicing that his teacher now better understands his needs. Rejoicing that we received this diagnosis in 2021, rather than 1991 or even 2001 when there was so much less understanding about the gifts of individuals with autism and what strategies can best help them thrive. I’m rejoicing in my unique, special, amazing kid–and rejoicing that I now understand him just a little bit better.
No doubt, my kids are going to carry a lot of labels and diagnoses over the course of their lifetime. I’ve carried my own labels over the course of my life, things like “scoliosis” and “postpartum depression” and “anxiety.” I have friends and loved ones who carry labels like “ADHD” and “diabetes” and “bipolar” and “Crohn’s Disease” and, yes, “autism.”
Some labels carry more weight, worry, and fear than others. I’m so abundantly grateful and privileged that my own son’s label is relatively “minor” (if we want to use language like that, which I don’t think is ideal).
Some days, I feel encouraged. He’s growing and changing all the time, he has a teacher who cares for his needs, and I am always learning more about his needs. Other days, I feel discouraged. The challenges seem immense, and the road ahead is long.
Discouragement is not the same as crumbling.
Grief is not the same as crumbling.
Worry, fear, disappointment, and confusion may all be part of the process…but they are not crumbling.
As I come to terms with my son’s autism diagnosis, I will not crumble.