April marks Autism Awareness Month, and as a passionate advocate, I feel compelled to spread knowledge about autism far and wide. I often engage with blogs that highlight families navigating the challenges of severe autism. These families inspire me daily. My experience, however, revolves around the opposite side of the spectrum—high-functioning autism. While I am incredibly grateful for my son’s progress, it’s essential to recognize that high-functioning autism presents its own unique set of hurdles.
We are a family of five. My husband and I are raising three children: Mia (9), Ethan (6), and Zoe (2). Our firstborn arrived in 2009, embodying the quintessential first child. In the summer of 2011, South Jersey experienced a series of natural disasters—a tornado, a derecho, and an earthquake—all in the same week our son Ethan was born. Was it mere coincidence? I often wonder.
Ethan’s journey began differently. We didn’t feel like experienced parents with him; our prior knowledge seemed irrelevant. At just 20 months, Ethan received an autism diagnosis. This September, he will transition to an inclusion classroom, a milestone that fills us with both excitement and anxiety.
Ethan’s ADOS assessment positioned him right in the middle of the autism spectrum. I often feel like we navigate the space between two worlds—the autism community and the typical world. Being caught in this middle ground can be lonelier than it appears.
At a glance, Ethan seems like any other kindergartener. Just a few years ago, that was far from true. At two, there was no babbling, no eye contact, and no pointing. He repeatedly failed hearing tests, so much so that we needed a sedated hearing exam to confirm his hearing was normal.
By age three, Ethan transitioned from early intervention services to a medical preschool. Words can’t express the gratitude I feel for his teachers, aides, and therapists—they are our superheroes. They have significantly aided Ethan’s development. Progress is not always easy for children on the spectrum, and I recognize how fortunate we are. Yet, the term “lucky” does not encapsulate the reality of high-functioning autism. It remains autism, after all. It’s not about poor parenting or a spoiled child throwing tantrums—it’s autism.
Ethan presents typically, which leads to surprised reactions during his meltdowns or when he struggles with overwhelming noises, like a barking dog, or when he spins himself into a supermarket display. Naturally, the protective instincts of a mother emerge!
The differences become more apparent when Ethan interacts with neurotypical children. He enjoys playing with small Disney figures, which he calls his “guys.” It warms my heart to see him happy, especially since it took time for him to learn how to engage in play.
Most children his age, however, don’t spend hours playing with Disney figures. Recently, a group of neighborhood kids came by looking for my oldest to play, but she declined. I could sense Ethan’s hope that they would invite him as well. They eventually asked him to join in a game of Nerf guns. He looked at me with pleading eyes, and my heart said yes, but my mind remembered a similar situation that ended poorly just weeks prior.
“Let him go. Encourage him a little,” my husband suggested. I let Ethan go, secretly persuading my 9-year-old to join him. I advised Ethan to wear his helmet to avoid getting hurt. What he didn’t anticipate was that they would be shooting at him. Unfortunately, the outcome was disappointing.
He didn’t engage in the game and ended up feeling sad—so was I. The specifics of the situation don’t matter; what’s crucial is that instead of joining neighborhood sports teams (where losing can be tough for him), we opted for adapted soccer. The coaches are phenomenal, but I often feel torn. Should I risk trying recreational soccer again, knowing he struggles, or allow him to shine as the MVP in special needs soccer?
The right answer is elusive, perhaps nonexistent. I recognize that this isn’t a life-or-death issue, but it is an authentic experience of high-functioning autism, and once again, I find myself stuck in between.
Ethan sometimes faces ridicule for engaging in “childish” interests. I once asked a close friend to remind me of the importance of these moments when they occur. I want to remember the times I cried because he was unaware of the laughter directed at him. Those painful moments when I had to shield my tears behind sunglasses stay with me. I strive to keep this perspective when Ethan faces teasing, but it’s challenging.
He often takes time to process emotions and experiences. He feels deeply, both the joy and the sorrow. During tough moments, my older daughter seems to connect with him best. She will create a scenario where someone teased her and share how she coped with it. I watch her, proud of the remarkable young woman she’s becoming, and I can’t help but shed a few tears behind my glasses.
Ethan’s early years were consumed by therapy and schooling, while Mia missed out on her own carefree childhood because she has always been there for him. I often joke that she’s been training to be the best speech therapist ever! Thank you, autism.
Our family is incredibly grateful for the autism community we’ve connected with. We belong to a fantastic local support group that offers advice, activities, encouragement, and most importantly, love. During Ethan’s challenging meltdowns, these special needs events have provided a comforting sense of belonging.
Yet, I sometimes grapple with guilt. I wish that others could share in the same fortunate experiences we have. I am under no illusion—at the end of the day, it’s a matter of luck. Being in the middle can feel isolating. While there are certainly more challenging situations to face, I want the world to understand that high-functioning autism is not an easy path.
Summary:
This article explores the complexities of parenting a child with high-functioning autism, highlighting the unique challenges faced by families in this situation. The author reflects on their own experiences with their son Ethan, emphasizing the emotional rollercoaster of navigating between the autism community and the typical world. Despite acknowledging the progress made, the author candidly discusses moments of isolation, societal expectations, and the deep emotional connections within the family.