April is Autism Awareness Month, and as an advocate for autism, I feel compelled to spread awareness. I engage with various autism blogs and read about families facing severe autism; their stories are truly inspiring. My experience, however, lies on the opposite end of the spectrum with what is often termed “high-functioning” autism. While I am immensely grateful for my son’s progress, high-functioning autism brings its own set of challenges.
In our family of five, my husband and I are raising three children: Emma (9), Jake (6), and Mia (2). Our firstborn, Emma, arrived in 2009 and embodies the typical traits of a first child. In the summer of 2011, the weather in South Jersey was tumultuous, with tornadoes, a derecho, and an earthquake all occurring in the same week that Jake was born. I sometimes wonder if that was mere coincidence.
From the beginning, Jake’s journey was different. We didn’t feel like experienced parents; all we had learned was overshadowed by the complexities of his situation. Jake received his autism diagnosis at just 20 months old. This September, he will transition to an inclusion classroom, and I feel a mix of excitement and anxiety.
Jake’s ADOS assessment placed him right in the middle of the spectrum, which often makes me feel like we’re navigating two worlds: one of autism and the other of neurotypical experiences. Being caught between these two realities can feel incredibly isolating.
To an outsider, Jake seems like a regular kindergartener, but a few years ago, that was far from the truth. At two years old, he had no babbling, no eye contact, and no pointing—he even struggled with hearing tests until a sedated evaluation revealed his hearing was perfectly fine.
When he turned three, he moved from early intervention to a medical preschool. I can’t express how grateful I am to his teachers, aides, and therapists—they are our superheroes, having made a significant impact on Jake’s development. Progress can be slow for children on the spectrum, and I am always reminded of how fortunate we are. Yet, feeling “lucky” doesn’t quite capture the essence of high-functioning autism. It remains a form of autism, not a result of poor parenting or defiance.
Because Jake appears typical, we often receive surprised reactions during his meltdowns or when he becomes overwhelmed by a barking dog or spins into a supermarket display. At these moments, my protective instincts kick in.
The differences become more evident during playdates with neurotypical children. Jake enjoys playing with his Disney figurines, which he affectionately calls his “guys.” It brings me joy to see him engaged, especially considering it took him a long time to learn how to play.
Last week, neighborhood kids came over asking to play with Emma. I could tell Jake wished they’d invite him too. After they asked him to join their nerf gun game, my heart soared, but previous experiences made me hesitant. “Let him go, push him a little,” my husband encouraged. So, I reluctantly let him join but bribed Emma to accompany him. I told Jake to wear his helmet for protection, not realizing he’d be shocked when they actually shot at him. Predictably, things didn’t go well.
He ended up feeling sad and rejected while I shared in his disappointment. Rather than traditional sports, we opted for adaptive soccer, where the coaches and staff have been incredibly supportive. Still, I feel torn about whether to try recreational soccer again, knowing how difficult it can be for him.
Jake sometimes faces teasing for enjoying “baby things.” I remember telling a close friend to help me recall how painful it was when he didn’t realize kids were laughing at him. Those memories still sting. I try to keep those feelings in mind whenever Jake is teased, but it’s a challenge.
He processes emotions deeply, experiencing both joy and sorrow intensely. Interestingly, my older daughter, Emma, often knows just how to help him when he’s upset. She shares stories about her own experiences that seem to resonate with him. It’s a beautiful thing to witness, even if it brings a tear to my eye.
Jake’s early years were filled with therapy and school, which meant Emma missed some of her own childhood innocence, as she has always been there for him. I joke that she’s been training to become the best speech therapist because of her experiences!
We are incredibly grateful for the autism community we’ve connected with; our local support group has provided invaluable resources, activities, and above all, love. During Jake’s challenging moments, I found solace at special needs events.
Sometimes, I feel guilty for our good fortune amidst the struggles of others. I recognize how isolating it can be to be stuck in the middle ground. There are certainly more significant challenges out there, but I want people to understand that high-functioning autism is still a complex reality.
In summary, life with a child who has high-functioning autism presents unique challenges and experiences. While there are moments of joy and progress, there are also times of isolation and heartache. As parents, we navigate these complexities with love, support, and a hope for understanding.
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