April marks Autism Awareness Month, a time when my passion for raising awareness takes center stage. I immerse myself in autism blogs and stories shared by families navigating the complexities of severe autism. Their experiences are nothing short of inspiring. However, my perspective comes from the other end of the spectrum, dealing with what is often termed “high-functioning” autism. While I am incredibly grateful for the progress my son has made, high-functioning autism presents its own unique set of challenges.
We are a family of five: my husband, myself, and our three children—Olivia (9), Ethan (6), and Mia (2). Our eldest, Olivia, is the quintessential firstborn, and we welcomed our son Ethan in the summer of 2011, a week filled with tornadoes, a derecho, and even an earthquake. Coincidentally, Ethan made his entrance into the world during this chaotic week, leaving me to ponder the connection.
From the very beginning, Ethan’s journey was different. We didn’t feel like experienced parents as everything we learned with Olivia seemed to vanish. By the age of 20 months, Ethan received an official autism diagnosis. This September, he’s set to transition to an inclusion classroom, filling us with excitement and apprehension at the same time.
Ethan’s ADOS assessment placed him firmly in the middle of the autism spectrum, and I often feel caught between two worlds: the world of autism and that of typical development. This middle ground is lonelier than it appears.
To the outside observer, Ethan resembles a typical kindergartener, but just a few years ago, that couldn’t have been further from the truth. At two, he displayed no babbling, lacked eye contact, and didn’t point. He consistently failed hearing tests, so much so that a sedated hearing assessment was necessary to confirm his hearing was normal.
By age three, he transitioned from early intervention to a medical pre-school. I can’t express enough gratitude for the educators and therapists who have been nothing short of superheroes in Ethan’s life. Their support has been invaluable, and while progress can be slow for children on the spectrum, we recognize how fortunate we are. Yet, the term “lucky” hardly encapsulates the complexities of high-functioning autism. It’s still autism—it’s not a result of poor parenting or a child throwing tantrums. It’s autism.
Because Ethan appears typical, we often face bewildered reactions during his meltdowns or when he struggles with loud noises, like a dog barking, or when he spins himself into a supermarket display. Protective instincts kick in, and I find myself channeling my inner mama bear!
The differences become stark when Ethan plays with neurotypical peers. He enjoys engaging with his little Disney figures, which he calls his “guys.” It warms my heart to see him happy, especially since he once struggled to engage in play.
Last week, neighborhood kids invited Olivia to play, and I knew Ethan secretly wished to join in. Despite being of similar ages, he often finds himself on the sidelines. When the kids offered to play with Nerf guns, I felt torn. My heart wanted to encourage him, but my mind recalled a similar past experience that ended in disappointment.
“Let him try,” my husband encouraged. I agreed, though I secretly coaxed Olivia into joining him. I reminded Ethan to wear a helmet for safety. He seemed shocked to discover they’d be aiming at him. Predictably, it didn’t go well.
Ethan couldn’t engage. He was disappointed, and so was I. The details don’t matter; what’s important is that instead of typical sports teams, we opted for adapted soccer. The staff is incredible, but I grapple with the decision: should we attempt recreational soccer again, knowing it may overwhelm him, or embrace the special needs soccer culture where he can shine?
There are no easy answers, and while I recognize this isn’t a dire issue, it’s the reality of living with high-functioning autism. Again, I find myself stuck in the middle.
Ethan has faced teasing for enjoying “childish things.” I’ve asked my best friend to remind me during these tough times of how painful it is to witness his struggles. I recall the moments that brought me to tears, hidden behind sunglasses. It’s a challenge to keep this perspective as I watch him endure ridicule.
He sometimes takes longer to process emotions and experiences intense feelings—both positive and negative. During his difficult moments, Olivia often steps in, sharing her own stories of dealing with teasing. My heart swells with pride for the compassionate young woman she’s becoming, and I can’t help but shed a few more tears.
Ethan’s early years were consumed by therapies and schooling, while Olivia’s childhood was significantly shaped by her role as his protector. I know she will grow up to be an amazing speech therapist, as she’s been training for this role her entire life. Autism has undeniably altered our family’s dynamics.
We are incredibly thankful for the autism community we’ve found. Our local support group offers invaluable advice, activities, and most importantly, connection. During Ethan’s meltdowns, I found solace among those who understood, who didn’t need words to empathize.
Yet, sometimes guilt creeps in. I wish every family could share our story of support and progress. I am aware that, at the end of the day, it’s about luck. Being caught in the middle can be isolating, and while there are certainly more challenging circumstances, high-functioning autism is still no walk in the park.
In summary, navigating life with a child who has high-functioning autism is a unique journey filled with ups and downs. While we celebrate progress and the community that supports us, we also confront the loneliness of being in a space that often feels misunderstood. Raising awareness and sharing our story is important, as we continue to advocate for understanding and acceptance.
For more insights on parenting and family life, you can explore articles on at-home insemination methods at Make a Mom and dive into expert advice at Modern Family Blog. The CDC also offers a wealth of information regarding pregnancy and home insemination, which can be found here.