Searching for Understanding: A Letter from a Parent of a Child with Autism

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I may not be the one on the autism spectrum, but the impact of autism shapes every choice I make—from planning our days to deciding what groceries to buy. I hope you can appreciate that as a parent to an autistic child, my mind is often a whirlwind of thoughts and concerns.

I know I can come across as a distant friend. The truth is, I get so wrapped up in our autism journey that I sometimes forget to check in on what’s happening in your world. You might think, “Wow, she’s really in her own little bubble,” but I promise you, I’m fiercely loyal. If you embrace both me and my son, you’ll find it tough to shake us off. Just know that my worries can sometimes take over and drown out other thoughts.

Please understand that financial stress is a constant companion. Autism-related expenses can be overwhelming. I can relate to parents who fret about the costs of sports or extracurriculars, but I’m over here trying to juggle the bills for ongoing speech therapy while our insurance thinks 30 sessions will magically solve everything. This burden brings guilt and confusion as I try to balance the best therapies with what we can realistically afford.

You should also know that I often find myself wearing many hats—creating opportunities and solutions for my son because the world isn’t always accommodating. When you offer to help, I might decline a few times before I say yes. It’s not about mistrust; it’s just hard for me to let go of the reins. Plus, explaining our routines and choices can be exhausting, especially when energy is low. Finding sitters who understand and can handle an autistic child feels like searching for a unicorn.

My marriage? Well, it’s been through the wringer. Though I’m lucky to share my life with a wonderful partner, this journey wasn’t in our plans. We’re perpetually sleep-deprived, with our days starting anywhere between “too early” and “at least he made it past 5 a.m.” Romantic evenings fade when I’m snoozing on the couch by 8:30 p.m. The stress of our son’s meltdowns can turn even the smallest annoyances into major conflicts. I have to remind myself that my husband is more than just a co-parent; he’s my partner in this journey.

Every outing with our son resembles a military operation. Spontaneity? Forget it! Our days are structured down to bedtime, which can help manage his anxiety but can also be a drag. “Let’s grab lunch!”—except there’s nothing on the menu he’ll eat. “An impromptu BBQ?” Sorry, we promised him swim time. I know this doesn’t help my case as a friend.

Scrolling through social media can be a rollercoaster. A simple photo of your neurotypical child doing something my son may never attempt can bring me to tears. Our first visit with Santa didn’t happen until he was ten, and even middle school dances feel like a distant dream. I still hold onto hope but have learned to protect my heart.

I’m not looking for pity; I just seek empathy. I might seem like a scatterbrained parent on overdrive, but I can be a blast if you’re patient with me. Autism rides along with us—whether my son is present or not.

For more insights, check out this resource and see how you can navigate challenges in parenting.

In summary, being a parent of a child with autism involves navigating complex emotions, financial stress, and the constant need for understanding and support. It’s a journey filled with challenges, but with empathy and patience from friends and family, we can find moments of joy amidst the chaos.