Updated: Aug. 13, 2015
Originally Published: March 2, 2015
Today was a day of revelation. It’s significant to say that because most days, I find myself just learning how mental fatigue won’t actually take me down. But today, I finally came to terms with a truth I’ve been avoiding: my son has Asperger’s Syndrome. We received the diagnosis nearly two years ago, yet, as I’ve realized, I haven’t been the quickest learner.
Initially, I dismissed the diagnosis. As a behavior therapist for children on the Autism Spectrum for over a decade, I thought I could easily spot the signs in my own child, Joey. When I noticed early indicators, I chalked it up to my heightened sensitivity.
Then, his preschool teachers called me in for what I thought was a routine parent-teacher meeting. Instead, they presented me with a checklist titled “Does Your Child Have Autism?” and claimed Joey showed most of the symptoms. My anger flared. How could they presume to educate me on Autism? If my son had it, I’d be aware.
In hindsight, I realize their approach was misguided; rather than providing concrete examples of Joey’s behavior, they relied on a generic checklist. This allowed me to easily refute their claims, convinced that since my son didn’t exhibit certain behaviors—like flapping—I could disregard the rest. I dismissed their concerns as naïve judgments from teachers who didn’t truly know Joey.
After a tearful call to a trusted colleague, Samantha, she agreed to observe Joey in class. Over coffee, she validated my feelings, affirming that the teachers were overlooking Joey and that, with some personalized attention, he would thrive. We ultimately agreed that getting him evaluated wouldn’t hurt; in Pennsylvania, securing an Autism diagnosis was relatively straightforward, and additional therapy could only benefit him.
In January 2013, Joey was evaluated by a doctor I’d previously worked with, and I expected him to align with my wishes. After I shared my observations, he asked, “So what do you want, Laura?” I realized then that this wasn’t just about Joey’s needs; it was about my desire to be the “super parent” who knew how to navigate the system. I requested an Asperger’s diagnosis alongside Therapeutic Staff Support (TSS) and Occupational Therapy (OT). And that’s precisely what I received.
Joey’s OT was a true gem, and he quickly bonded with her. She taught him essential skills like climbing, balancing, writing, and cutting. Suddenly, he could engage with other kids on the playground and even began to explore new foods—an incredible feat for him. His TSS was engaging and knowledgeable, helping Joey break out of his shell to play more freely with other boys, even if the teachers didn’t always appreciate the ruckus. The Mobile Therapist was so dedicated and effective that I often felt inadequate in my own role. Despite my initial denial, the support we received was invaluable.
And it worked! Joey experienced fewer tantrums, increased social interactions, and a broader food palate. He made great strides to the point where he no longer needed OT or feeding therapy within a year. During his second evaluation, the doctor suggested that if progress continued, he could lose the diagnosis altogether.
When it came time for Kindergarten, I hesitated about disclosing his diagnosis to the school. After all, the doctor mentioned he might not even have it by January. After much deliberation, I decided against sharing it. I didn’t want him to bear the stigma of a label, especially when I was convinced he wouldn’t encounter any significant issues.
Only two weeks into the school year, his teacher reached out. Although her email was kind, her observations mirrored the generic checklist I had encountered before. In that moment, the reality hit me hard. This wasn’t about my perceptions or cleverly navigating the system; it was about my son needing support to do what other children do effortlessly.
I quickly responded, acknowledging my misjudgment regarding Joey’s ability to thrive independently in a mainstream classroom. I had fallen into the trap of believing he could manage on his own, convinced of his brilliance. Yet, we needed to convene with the school psychologist to assess whether Joey required Special Education services to help him stay focused, follow directions, and behave appropriately. I found myself apologizing for withholding crucial information from those who needed it most—was it denial? Fear of a label?
Ultimately, I owe my biggest apology to Joey. By ignoring the truth for so long, I made his reality seem shameful in my mind. But he is undeniably a remarkable person—my heart outside my body, embodying the best parts of me while adding even more extraordinary qualities. While this diagnosis doesn’t define him, it is an integral part of who he is. His talents, quirks, and challenges are uniquely Joey.
Reflecting on all the signs, I realize I should have recognized them sooner. We often do strange things in our efforts to protect our children, and perhaps myself, from the truths we fear.
So today, I embraced a lesson I should have learned long ago. It took multiple teachers, a psychologist, countless therapists, and a river of tears for me to understand that my child, while not perfect, is perfectly himself.
The takeaway? This journey is daunting, but it’s real, and ignoring it won’t change anything. What truly matters is the unwavering love of our family and the certainty that my son is destined for greatness, even when I stumble along the way. From this point forward, I’ll proudly support Joey’s identity—his Asperger’s is a part of him, but it doesn’t define him; he is a beautifully unique individual, and I am endlessly grateful to be his mom.
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Summary:
This piece reflects a mother’s journey of acceptance regarding her son’s Asperger’s diagnosis. Initially in denial, she learns to recognize the support he needs for success in life. Through therapy and interventions, her son shows remarkable progress, leading her to confront her fears and embrace his unique identity. The narrative underscores the importance of acknowledging reality and the love that binds their family.