When my sons were little I knew nothing about early childhood development, and I had a strong attachment to what I thought motherhood should look like. When our pediatrician suggested my middle child was on the autism spectrum, I was shocked and totally unprepared.
The news hit me hard, and I definitely wasn’t ready to hear it. Usually I am an upbeat, look-on-the-bright side, always stay-positive kind of person. But this sent me into a shame spiral of intense feelings of denial and grief.
Now that some time has passed and allowed me the grace of hindsight, I can honestly say I’m grateful for the experience and the negative feelings I had towards the idea of his diagnosis. It has forced me to grow in ways I probably wouldn’t have otherwise. Even though I don’t have all the answers, I am leaning into my courage and trusting my motherly instincts.
When I set out on the journey of motherhood, I had a strong attachment to what it would look like. Then as most new moms quickly realize, life happens—and reality sets in. For both good reasons and bad, it was different from anything I had prepared myself for. I could accept the defeat of not loving breastfeeding, more trips to the drive-thru than I had anticipated, and a little more screen time than was ideal. Those things could occasionally slide because I felt like I could control them.
What I couldn’t accept was an autism diagnosis. Autism was something I didn’t know anything about, let alone thought I could control. Things would have to change in ways I wasn’t ready for. This threat to my idea of how my life would unfold was so not welcome.
My son’s development was undoubtedly behind his peers, but there weren’t any glaringly obvious red flags waving in my face. If there were, I chose to ignore them in favor of positive thinking and hopefulness that he was just a late bloomer. If I could provide a warm environment for him to thrive in, he would catch up. When he was ready, he would outgrow these minor setbacks. No one would ever have to know that he didn’t take his first steps until he was 19 months or that he couldn’t string more than two or three words together, like… ever.
It took our pediatrician speaking up to begin the process of forcing me out of my denial. At his four year checkup she suggested he was showing a lot of signs of autism. She saw him for a few minutes once or twice a year. How could she have the guts to point out something so serious? Autism wasn’t part of the vision I had for our family, so I assured myself that she was wrong. She had to be. I could reconcile that I relied on streaming services more than I cared to admit, and we weren’t the kind of family that did things like Meatless Mondays. But what kind of mom would I be if I had failed to recognize something as life-altering as this?
I was giving motherhood all I had and still felt like I was coming up short. I couldn’t possibly add more weight to this heavy load. I wasn’t prepared to step up and be the kind of mom who has to constantly advocate for their child’s well-being. Just the thought of needing to navigate different types of therapies, services, a new standard of developmental milestones was exhausting. I didn’t want this life, I’m not strong enough for it. I didn’t think I had anything left to give my kids and wasn’t ready for autism to test my theory.
The waitlist for formal diagnosis is long. That gave me time to Google, wonder, compare and try to avoid the fact that this was happening. Opting instead to stay rooted in the comfort of denial. All the feelings I had about this looming diagnosis were negative, which felt deeply shameful in itself because I was sure that if I could only stay positive and see the bright side, this would all just go away. But no matter how much toxic positivity I tried to force upon myself, the outcome was exactly as our pediatrician had predicted. Autism spectrum disorder. Severe.
After specialists had confirmed the diagnosis, I felt the need to open up to my family and closest friends. They deserved to know that my son’s personality couldn’t be chalked up to preschooler quirkiness forever. Something more serious was happening. We would need intervention and support. Even after I had told a handful of people in my inner circle, I still couldn’t get the words out without choking on tears. Thinking about the extra challenges he would need to face on the road ahead of him destroyed me.
I was so confused by the anger and resentment I was feeling. My son wasn’t some new kid that had wandered into my life. He was the same child I had loved deeply for years. Seeing him in this new way didn’t change who he was. Villainizing the diagnosis wouldn’t make it go away. The person I planned on him growing into was just someone I had made up in my mind, so why was he so hard to let go of?
I didn’t get to have it both ways. I couldn’t keep my son and leave autism behind. I needed to let go of the life I thought I would have and start loving the one I was living. Autism is an inherent part of who he is, and I love him wholly.
It took me a while to realize that staying positive didn’t mean needing to deny the sadness and pain. It meant sitting in the fear, the feelings of being lost, and knowing in time that I would find my way again. Feeling sure that even though these days were hard, there were better ones ahead. Allowing the grief, guilt, anger, was the only way for me to move through it and get to a place of gratitude.
Autism has allowed me to realize that motherhood isn’t about making the life you imagined a reality. It’s about confronting your greatest fears and challenges, while the love for your child grows stronger in the face of them.
My attitude has shifted from showing up from a place of expectation to showing up from a place of acceptance. I might not have all the answers, but I am leaning into my intuition. Letting go of needing to know the next ten steps to move forward, and embracing that just one or two is enough. It has opened me up to all of the possibilities life offers, even if they don’t feel comfortable at first. Committing to this motherhood journey, knowing that I am enough.
No one escapes the hardship of unexpected changes in their life. Embracing those negative feelings allowed me to use the experience to become more loving, complete, and strong. Fighting reality only kept me stuck in negativity and disappointment. Allowing myself to lean into the hurt made the dream I’d held for my family evolve into something more beautiful and whole than I knew before. My children are exactly who they are meant to be, and they are teaching me to become exactly the person I am supposed to be.
This experience of grief has been a gift for me. It gave me the space to realize that staying positive all the time is literally impossible. It helped me see that toxic positivity is incredibly draining, and processing the negative emotions we feel is sometimes the only way to make peace with our pain. It has empowered me to shed my idea of what motherhood and my children should be.
It allowed me to dream of something bigger, more compassionate, and real. It forced me to let go of my expectations and see something infinitely more alluring—the raw humanness that is my children—and all the beauty that they are.
Kathy is a mom of three with one child on the autism spectrum. She’s passionate about creating a more inclusive society, and connecting with other families affected by autism to let them know they aren’t alone. Learn more about Kathy on her blog, The Autism Edit.