The book that changed the way I think about my autistic son

By Liz Koch

“I’m not going to school,” my nine-year-old son said, his eyes flashing with anger. 

I took a deep breath and tried to roll the tension from my shoulders, having already gone through this with him several times that morning. And multiple times the morning before, and the morning before that. My patience was frayed as I wearily took a sip of my now-cold coffee. After days of intense school refusal meltdowns and no idea of exactly why he didn’t want to go, we were both frustrated and exhausted. I sat cross-legged on the floor and invited him to join. He dropped down stiffly beside me. 

“You’re angry and don’t want to go to school because it feels hard. Did I get that right?” This was a parenting strategy I plucked from the mental file I had collected from his psychologist and occupational therapist. I then began a deep pressure sensory routine to help regulate his nervous system. 

“Yes,” he growled, but this time his body was starting to lean in towards mine, to relax a little, and his hands were no longer such tightly balled fists. 

“I’m wondering why school feels so hard right now, buddy.” I paused and then braced, knowing this statement might trigger another outburst.

But for whatever reason, at that moment, the clouds parted, and in a hushed tone my son shared with me, “I’m the slowest kid at recess and nobody really talks to me.” My heart clenched as I saw his tears gathering. 

As parents, we want to be the-fixer-of-all-things when our child is hurting. This is pretty universal. What is less common is that my son was recently diagnosed with autism, even as he doesn’t display some of its more classic and stereotypical behaviors. He has little difficulty making eye contact. He yearns for social connection even as he struggles with understanding how to go about it. And he has a vivid imagination through which he experiences and processes the world-with his trusty stuffed T-Rex at his side. 

Once the diagnosis was official, I began researching treatment options online and was quickly overwhelmed by the amount of information available. As a parent just beginning my journey into this world and culture, I turned to a trusted friend, whose son is also diagnosed with autism, and asked where I should start. She recommended the book Uniquely Human by Barry Prizant, which sets forth a humanistic and depathologizing approach to understanding autism, one that deeply resonated with me. 

Autism isn’t an illness. It’s a different way of being human,” Prizant writes. With over four decades of professional experience, he concludes that “there is no such thing as autistic behaviors. These are all human behaviors and human responses based on a person’s experience.” Instead of stripping away behaviors deemed different or undesirable, they are seen as purposeful and self-regulatory. It’s about finding the root cause of the behavior and identifying how to better support the individual through our attitudes and actions. This viewpoint matches my perspective that my son is a whole child, not just a diagnosis, and understanding that his behaviors are indicative of his needs.

We live in a society that gives endless shiny promises as to how to solve our problems, if only we follow a particular person on social media and buy their five-step program. When the problems are especially messy and complicated, it’s easy to become disconnected from our instincts and end up feeling disempowered about parenting our children. I found a chunk of solid land in Prizant’s book, and there were four big-picture takeaways for parents of children with autism that I found especially helpful. 

Parents are the experts about their child.

As someone who struggles with chronic anxiety, trusting my instincts has been a challenge. However, there have been times when I’ve just known what needs to be done. Like when we took a break from a particular therapy that wasn’t working or an impromptu beach trip as a day off from the stress of online pandemic schooling. “Professionals can offer perspective, resources, experience, and insight, but that doesn’t replace or trump an attentive parent’s perceptions,” Prizant says.

Find your community.

My children’s psychologist ran a group for “moms caring for kids with an extra dose of ‘special sauce.’” We met once a week over the course of a year, and it provided a type of connection and community I had never experienced before as a mother parenting a neurodiverse child. It was amongst those mothers that I began to truly understand the importance of finding your people. From the knowing nods when detailing the latest sweaty meltdown, to the smiles elicited while explaining your child’s most recent step forward, the solidarity and unconditional acceptance was life-changing. Parenting children with challenges can be isolating. But being able to share the experiences of other people in similar circumstances serves as an antidote to some of that loneliness.

Decide what is right for your child and family.

With a long list of recommendations for next steps/ways to move forward, there can be a sense of urgency to do as many of them as possible and a feeling of guilt if you don’t. For many parents, myself included, the first port of call is to dive in and research what can be done to support their child. After the initial shock of just now much information there was online, I slowed down and intentionally sought out reputable sources that aligned with my own values and maternal instinct. I’ve found it’s essential to discern what makes sense for your particular child in your particular family ecosystem.

Have faith and hope.

Faith takes many forms: spiritual faith, faith in your child, faith in the professionals on your child’s team, faith in yourself. What unites these types of faith is hope. Hope that everybody involved has your child’s best interest at heart. Hope that others will try to understand your child’s beautiful uniqueness. Hope that you’re doing what’s best. Hope for the future. As Maya Angelou once said, “In order to survive, a human being needs to live in a place furnished by hope.” 

This collection of tips provided me with a much-needed insight: I already possess many of the skills needed to help my son. I now harbor a new sense of hope as I navigate this next part of our journey. The morning of my son’s tearful admission about why he didn’t want to go to school made me reassess the support system we had in place. I collaborated with his professional team and felt empowered as a parent. The best part was that it didn’t take long for him to begin smiling when I asked about recess.

Liz Koch lives in the Pacific Northwest with her husband, two children, and a couple of adorable pandemic puppies. She writes about the ups and downs of parenting in a neurodiverse family.

Author’s note: There is a lot of discussion within the autism community about shifting from using “person-first language” to “identity-first language.” I am still learning about this topic, and at this point my son does not understand these nuances enough to decide for himself. It is an ongoing conversation that he will be a part of as he gets older and is able to voice his own preferences. 

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