April is Autism Awareness Month, and as an autism advocate, I feel compelled to spread awareness far and wide. I follow various autism blogs and read about families affected by more severe forms of autism, drawing inspiration from their journeys. However, my experience lies on the opposite end of the spectrum, as we navigate life with “high-functioning” autism. While I am incredibly grateful for the progress my son, Ethan, has made, there are unique challenges that come with this diagnosis.
Our family consists of five members: my husband and I, along with our three children—Sophie (9), Mason (6), and Ella (2). Our oldest child, Sophie, was born in 2009 and embodies the characteristics typically associated with firstborns. During the summer of 2011, our region experienced extreme weather events—a tornado, a derecho, and an earthquake—all in the same week that Mason was born. Was it merely a coincidence? I often find myself pondering this.
From the very beginning, Mason’s journey has been distinct. We quickly realized we weren’t seasoned parents anymore, as everything we thought we knew went out the window. He was diagnosed with autism at just 20 months old. This coming September, Mason will transition to an inclusion classroom. We’re thrilled yet apprehensive about this new chapter.
Mason’s ADOS test placed him in the middle of the autism spectrum, which often leaves us feeling caught between two worlds: the world of autism and that of neurotypical children. This in-between space can be lonelier than it appears.
At first glance, Mason seems like any other kindergartner, but that wasn’t always the case. By age two, he exhibited no babbling, lacked eye contact, and didn’t point at objects. He consistently failed hearing tests, and it took a sedated examination to confirm that his hearing was actually normal.
By age three, Mason had transitioned from early intervention to a medical preschool. I can’t express enough gratitude for his teachers, aides, and therapists—they are our superheroes. Their support has been invaluable, and I know how fortunate we are. Yet, “lucky” isn’t a term that encapsulates the reality of high-functioning autism. It’s still autism. It’s not the result of bad parenting or a spoiled child throwing tantrums; it’s simply autism.
Since Mason appears to be typical, we often receive bewildered reactions during his meltdowns or when he cannot cope with a barking dog or spins himself into a supermarket display. Trust me, the protective “mama bear” instinct comes out strong!
The true differences become evident when Mason plays with neurotypical peers. He enjoys engaging with his little Disney figures, which he affectionately calls his “guys.” This brings me joy, as he finally seems to comprehend the concept of play. However, most children his age don’t spend hours playing with Disney figures.
Recently, some neighborhood kids came over looking to play with Sophie. I could see that Mason wished they would invite him to join. They eventually did, asking him to play with Nerf guns. I was torn; my heart said yes, but my brain recalled a similar situation that ended unfavorably just weeks prior.
“Let him try, push him a bit,” my husband suggested. So, I allowed him to go and even bribed Sophie into joining him. I told Mason to wear his helmet for protection, not realizing it would shock him to learn they’d be aiming at him. Unsurprisingly, he didn’t participate and ended up feeling sad, which made me sad too. Instead of typical sports or recreational teams—where losing isn’t his strong suit—we decided to enroll him in adapted soccer. The coaches are fantastic, but I often feel conflicted. Should I attempt recreational soccer again, knowing he may struggle, or should we stay in special needs soccer where he excels?
There are no easy answers. I am aware that this isn’t a life-or-death issue, but it is a reality of high-functioning autism, and once again, I find myself stuck in the middle.
Mason sometimes faces ridicule for engaging in “baby-like” behaviors. I’ve asked my best friend to remind me of the times I cried because he didn’t understand when kids laughed at him, those moments when I needed sunglasses to hide my tears. I strive to remember those painful times whenever he faces teasing, but it’s not easy.
He takes time to process emotions and experiences deeply—both the good and the bad. During tough moments, it’s often Sophie who helps him the most. She shares her own experiences of being teased, teaching him how to cope. Seeing my nine-year-old act with such maturity makes me proud yet emotional.
Mason’s early years were largely defined by therapy and schooling, while Sophie missed out on her childhood innocence by being his constant support. I often joke that she will become the best speech therapist one day, given her extensive training. Curse you, autism!
Our family is grateful for the autism community we’ve connected with; the local support group offers invaluable advice, activities, and most importantly, love. During Mason’s meltdowns, these events provided a sense of relief. Yet, I sometimes feel guilty for our good fortune. I wish others could share in our story, recognizing that luck plays a significant role. Being caught in the middle can feel isolating. Yes, there are families facing more severe challenges, but I want the world to understand that high-functioning autism is still a hurdle.
In conclusion, the journey of raising a child with high-functioning autism is filled with ups and downs. While I cherish the progress and support we have, I also acknowledge the unique challenges that come with it.
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Keyphrase: Raising a child with high-functioning autism
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