As April marks Autism Awareness Month, I feel compelled to share my experiences as a parent of a child with high-functioning autism. I immerse myself in blogs and stories of families dealing with more severe forms of autism, and they are truly inspiring. However, my journey is centered around the challenges and joys of high-functioning autism, a different reality that presents its own set of hurdles.
Our family consists of five members: my husband and I, along with our three children—Emma (9), Lucas (6), and Mia (2). Emma, our firstborn, came into the world in 2010, and her arrival was met with the usual excitement of new parents. However, in the summer of 2013, just as we welcomed Lucas, South Jersey faced unexpected tornadoes, a derecho, and an earthquake in one chaotic week. Coincidence? I often wonder.
From the start, Lucas’s journey felt distinct. We didn’t possess the experience we thought we had; everything we knew seemed to vanish. Lucas received his autism diagnosis at 20 months. As he transitions to an inclusive classroom this September, we’re filled with a mixture of excitement and anxiety.
Lucas’s ADOS assessment positioned him squarely in the middle of the autism spectrum. This has left me feeling caught between two worlds: one of autism and the other of neurotypical experiences. It can be surprisingly isolating to navigate this middle ground.
To outsiders, Lucas may seem like a typical kindergarten student. Yet, just a few years ago, things were far from normal. At age two, he exhibited no babbling, avoided eye contact, and didn’t point. He repeatedly failed hearing tests, and it took a sedated exam before we learned his hearing was perfectly fine.
By age three, he moved from early intervention to a specialized preschool, where the teachers and therapists became his champions. Their dedication helped him progress in ways I will forever cherish. While I recognize how fortunate we are, it’s crucial to remember that high-functioning autism still represents the challenges of autism itself. It’s not a reflection of poor parenting or a spoiled child; it’s simply autism.
Lucas often appears typical, which leads to bewildering reactions during his meltdowns or when he struggles with loud noises. It’s moments like these that awaken my protective instincts. The differences become stark when I see him interacting with his neurotypical peers. He loves playing with Disney characters, which brings him joy, yet it’s a reminder that many kids his age are engaged in different kinds of play.
Last week, neighborhood kids invited Emma to join them. I could see the hope in Lucas’s eyes as he wished to be included. When they asked him to play with Nerf guns, I felt torn. My heart said yes, but my mind recalled past experiences that hadn’t ended well.
“Let him try,” my husband encouraged. I hesitated but allowed Lucas to join, even nudging Emma to accompany him. I suggested he wear his helmet for protection. Little did he realize the surprise awaiting him—he was not prepared for the reality of being shot at.
The outcome was disheartening. Instead of bonding with the neighborhood kids, Lucas felt dejected. I felt the sadness too. Rather than traditional sports, we enrolled him in adapted soccer, where the coaches are wonderful. Yet, I grapple with the choice of whether to revisit mainstream sports or continue in an environment where he can shine.
This is not a trivial dilemma, but it highlights the complexities of high-functioning autism. While I recognize there are families facing more severe challenges, I want to emphasize that high-functioning autism comes with its own set of struggles.
Lucas sometimes faces ridicule for engaging in what others deem “babyish” interests. I’ve asked friends to remind me of the times I felt heartache witnessing him being laughed at. I strive to keep those moments in the forefront of my mind, though it’s not easy.
He processes emotions deeply, feeling both joy and sadness intensely. During tough moments, his older sister, Emma, often steps in to help. She shares her own experiences of being teased, and I marvel at her maturity. It brings tears to my eyes as I recognize the incredible person she is becoming.
Lucas’s early years were consumed by therapies and schooling, and Emma has had to adjust her childhood to accommodate him. I envision a future where she becomes an exceptional speech therapist, having trained her whole life in empathy and understanding. Autism has certainly altered our family dynamics.
We are incredibly grateful for the autism community we’ve discovered, which provides invaluable support and love. At events designed for families like ours, I’ve felt a sense of relief when Lucas has meltdowns—knowing I’m not alone in our struggles.
Yet, I sometimes wrestle with guilt, wishing for every family to have the same opportunities we’ve experienced. I’m aware that while there are challenges, there are also blessings. Being caught in the middle can be isolating, and although others may face more severe circumstances, it’s important to acknowledge that high-functioning autism is still a significant journey.
In summary, navigating life with a child who has high-functioning autism presents unique challenges that can often feel isolating. While we celebrate progress and community support, we must also recognize the complexities and emotional weight that accompany this journey.
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