April is Autism Awareness Month, and as an autism advocate, I feel compelled to spread awareness. I often engage with various autism blogs and learn about families grappling with severe forms of autism, whose stories are nothing short of inspiring. My perspective, however, comes from the other side of the spectrum—what is often referred to as “high-functioning” autism. While I am incredibly grateful for the progress my son has made, the journey with high-functioning autism is not without its own set of challenges.
Our family comprises five members: my husband and I have three children — Mia (9), Ethan (6), and Zoe (2). Our eldest child, Mia, came into our lives in 2010 and embodies the typical characteristics of a firstborn. In the summer of 2012, South Jersey experienced a series of natural disasters, including tornadoes, a derecho, and an earthquake—all occurring in the same week as Ethan’s birth. Was it mere coincidence? I often find myself pondering this.
From the outset, Ethan’s experience was different. Our previous parenting experiences felt irrelevant. He received an official autism diagnosis at just 20 months old. This September, he will transition to an inclusion classroom setting, a thought that fills us with both excitement and anxiety.
Ethan’s ADOS assessment placed him firmly in the middle of the autism spectrum. This leaves us navigating between the autism world and the neurotypical world—a position that can often feel isolating. From afar, Ethan appears to be just another kindergartener. However, this was far from the case just a few years ago. At age two, he exhibited no babbling, lacked eye contact, and did not point. He consistently failed hearing tests to the point that a sedated test was necessary to confirm his hearing was normal.
By age three, he had moved from early intervention to a medical preschool. The educators and therapists who worked with him are nothing short of superheroes in my eyes; they made a world of difference for Ethan. Progress for children on the spectrum doesn’t always come easily, and I recognize how fortunate we are. However, “fortunate” doesn’t quite capture the essence of living with high-functioning autism. It remains autism. It is not a result of poor parenting or a spoiled child throwing tantrums. It is simply autism.
Because Ethan appears typical, he often elicits surprised reactions during meltdowns or when he is overwhelmed by noises, such as a barking dog. The protective “mama bear” instinct definitely surfaces! The differences become apparent when he interacts with neurotypical peers. He enjoys playing with little toy figures, which he affectionately refers to as his “guys.” This brings me joy, as he seems to relish in this play. For a long time, he struggled with understanding how to engage in play.
Last week, neighborhood kids came over looking for Mia to play, which she declined. I could sense Ethan’s longing to be included. After all, he is nearly the same age as they are. They eventually invited him to join a game of nerf guns. With pleading eyes and words, he wished to participate. My heart said yes, but my mind recalled a prior experience that ended poorly.
“Let him try, challenge him a bit,” my husband encouraged. I reluctantly agreed and even incentivized Mia to join him. I reminded Ethan to wear his helmet to protect himself from potential shots to the head. The surprise on his face when he realized they would be shooting at him was palpable. Unfortunately, the experience did not go well.
He didn’t engage in the game and ended up feeling sad. I felt disheartened too. Instead of traditional sports or recreational teams—where the notion of losing can be tough—we opted for adapted soccer. The coaches are incredible, but I find myself torn. Should we attempt recreational soccer again, despite knowing he may struggle? Or do we remain the stars of special needs soccer?
There isn’t a clear answer, and I understand this isn’t a matter of life and death. Yet, living with high-functioning autism places me in a complex space—one that often feels lonely.
Ethan sometimes faces ridicule for his “childish” interests. There was a moment when I asked a close friend to remind me of the times I felt heartbroken because he didn’t realize other kids were laughing at him. I try to hold on to those memories of pain when he faces teasing now, but it’s not easy.
Processing emotions takes time for Ethan. He feels deeply, both the highs and the lows. During tough moments, it’s often Mia who steps in to help him navigate his feelings by sharing her own experiences. I watch her, amazed by the empathetic young lady she is becoming, and it brings tears to my eyes.
Ethan’s early years were filled with therapies and schooling, which meant Mia missed out on some of her own carefree childhood moments, always being his support system. When she grows up, I have no doubt she will excel as a speech therapist—she’s practically been training for it her whole life. Thanks to autism!
We are incredibly grateful for the autism community we’ve connected with. Our local support group offers advice, camaraderie, activities, and, above all, love. During Ethan’s meltdowns, when words failed him, these events provided a sense of relief.
At times, I grapple with guilt, wishing that others could share in the fortune we’ve experienced. I am fully aware that our situation is not the worst it could be; still, I want the world to understand that high-functioning autism is not a walk in the park.
Summary
Living with a child who has high-functioning autism can be a unique journey filled with both challenges and triumphs. Parents often find themselves navigating the complex space between the autism community and the neurotypical world, facing moments of joy and heartache alike. Support networks provide invaluable resources as families strive for inclusion and understanding in a world that can sometimes feel isolating.
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