When it comes to my child’s autism, I don’t carry sadness. What truly weighs on me is everything else that accompanies it: the overwhelming anxiety, the obsessive-compulsive behaviors, the struggles with sensory processing, the boundless energy, and the intellectual challenges that complicate our daily lives. Unfortunately, these issues often remain unaddressed during Autism Awareness Month. Instead, my social media feeds are flooded with uplifting quotes and stories of individuals with autism who possess remarkable talents. While I appreciate these narratives, they often fail to capture the full spectrum of our experiences. It leaves little room for hope when I know our reality is far from those portrayed stories.
My nearly 13-year-old son still believes in Santa Claus and the Easter Bunny, and he finds comfort in watching Baby Einstein to relax. His room resembles a chaotic scene from a children’s show. I am not disheartened that he isn’t engaged in typical teenage interests, though I often wonder what those even are. They seem to be cloaked in mystery, with hobbies that don’t include hunting down rare Blue’s Clues DVDs online—thank goodness for eBay.
What truly saddens me is that even the simplest of fun plans come with a hefty dose of stress, requiring backup plans for when things inevitably don’t go as expected. Often, I find myself hesitant to venture out, needing to muster the courage to push both him and myself beyond our comfort zone. My son has an uncanny ability to sense my uncertainty. I wish I could simply express something that should bring him joy without needing to prepare a detailed social story.
What hits hardest is the discrepancy between the “feel good stories” shared by friends and the reality of our everyday struggles. Do they understand the constant worry, stress, and frustration we face? This isn’t sensationalized; it’s our life. It would be great if more people had insight into our world, though inviting them over comes with its own set of challenges—unless, of course, they bring fries, which can make everything better.
This is the aspect of autism I wish more people were aware of.
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In summary, while Autism Awareness Month brings attention to many positive aspects of autism, it often overlooks the daily realities faced by families like mine. We navigate a world filled with challenges that require understanding and compassion beyond the feel-good stories.