April is designated as Autism Awareness Month, and it holds a significant meaning for many families, including mine. Last year, we received an official diagnosis of Autism Spectrum Disorder (ASD) for my son. The surrounding media and campaigns were overwhelming yet, in their own way, enlightening.
As I reflect on the past year, I realize I can’t offer definitive guidance about which autism organizations merit support or which practices yield the best outcomes. Instead, I can share some raw truths about the experience of being a parent to a child with autism. Here’s what I wish others understood:
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Overwhelmed is Our Normal
Every parent faces challenges, but for those of us raising children with autism, the list grows longer. From navigating diagnoses, Individualized Education Programs (IEPs), speech and occupational therapy, to dealing with insurance companies and endless waiting lists, the exhaustion can be profound. -
Tears are Commonplace
We experience a range of emotions—joy, frustration, and anger. Autism can draw out our feelings in ways we never anticipated, often leading to tears that we can’t always hold back. -
Jealousy Can Creep In
While we genuinely celebrate your children’s achievements, it can be tough to hear about their successes, knowing that our own child may not reach those same milestones. We appreciate your stories, but understand if our reactions sometimes seem subdued. -
Waiting is Part of the Journey
Our lives often involve waiting—not just for therapy appointments but for meltdowns to pass, for reports from teachers, and for interventions to take effect. This waiting can feel endless, and we yearn for a sense of calm. -
Fear is a Constant Companion
We harbor deep fears about our children’s futures—concerns about their happiness, potential bullying, and the many obstacles they face. The feeling of helplessness can be overwhelming, making us question our efforts as parents. -
Setbacks Outnumber Triumphs
Reports from school often highlight challenges rather than successes, which can be disheartening. The frequency of these difficulties can weigh heavily on us, overshadowing the small victories. -
Loneliness is Real
Even with support from friends and new connections, there’s often a profound sense of isolation. It’s as if we’re shouting in a crowded hall, yet feeling unheard. -
Pride Amidst Struggles
Despite our challenges, we often harbor immense pride in our children’s achievements. Their successes are hard-earned and remind us of their resilience and strength. -
Sadness Persists
Regardless of when the diagnosis occurred—whether five minutes or five years ago—the sadness can linger. We carry this weight with us, even when we appear okay on the surface. -
Your Support Means Everything
Your willingness to remain by our side, despite the complexities, is invaluable. You provide a sense of comfort and understanding that we deeply appreciate.
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In summary, being a parent of a child with autism involves unique challenges and emotional complexities. The journey is filled with ups and downs, but understanding, support, and recognition of these experiences can foster deeper connections and empathy.