I’m not the one living with autism, yet it permeates every choice I make, every outing I plan, and even what I buy at the store. As a parent of a child with autism, I am rarely truly at ease or able to escape my thoughts.
Please know that I sometimes come off as a lousy friend. I get so hyper-focused on all things autism-related in my life that I often forget to ask about your world. You might think, “Wow, she’s really self-absorbed,” but I promise you I’m fiercely loyal. If you welcome both me and my son, you might find it hard to get rid of us! Just understand that I can easily spiral into a cycle of worry about my child. It’s not that I don’t care about what’s happening in your life; I’m just busy putting out little fires around us.
Please realize that I have other stressors in my life as well, like money—autism can be incredibly expensive. I totally get it when parents complain about the cost of sports and activities, but I’m here trying to figure out how to afford speech therapy for the rest of the year. Our insurance company seems to think my son’s communication issues will magically resolve after just 30 sessions. It’s a constant source of guilt and confusion as I weigh what therapies are essential against what we can actually afford.
Please understand that I often have to create solutions for my son because the world doesn’t always cater to his needs. If you offer to help, I might decline initially. It’s not that I don’t trust you; I’m just so used to doing it all myself that it’s hard to believe anyone else could manage. Plus, explaining our routines and choices can be exhausting. Finding babysitters who are equipped to care for a child with autism is like hunting for a needle in a haystack. It’s tough for me to let go and trust someone else.
Please know that my marriage has been tested. Even though I’m lucky to be married to a fantastic partner, this isn’t the journey we envisioned. We’re perpetually sleep-deprived, and when your day starts at “way too early” and you’re falling asleep on the couch by 8:30 p.m., romance takes a back seat. Watching our son experience anxiety and meltdowns can fray our nerves, making minor annoyances seem monumental. Sometimes, I forget that my husband is more than just a co-parent; he’s my partner in this wild ride. We often end up running on autopilot, focused solely on our child and his future.
Please understand that every outing with my son feels like planning a military operation. There are no spontaneous adventures or just wandering around. Our days are meticulously scheduled, which can help reduce my son’s anxiety, but it can also feel stifling. “Let’s grab lunch! Oh wait, there’s nothing on that menu he’ll eat.” “An impromptu BBQ? Sorry, we promised to go swimming at that time.” I recognize that this makes me a less than ideal friend, and I’m sorry for that.
Please understand that even a simple scroll through social media can flood me with emotions. I might find myself tearing up over a friend posting a picture of their neurotypical child doing something my son may never experience. It took until he was 10 for us to get a picture with Santa! Now I see kids his age heading to middle school dances, and I wonder if we’ll ever navigate that. I hope we will, but I’ve learned to brace myself for surprises.
Please know that I’m not looking for pity, just empathy. I may seem like a scatterbrained, overly protective parent, but I can be fun if you’re patient with me. Just remember that autism is always part of the journey, whether my son is there or not.
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Summary
Parenting a child with autism brings unique challenges that can strain friendships, finances, and relationships. This letter highlights the emotional rollercoaster that comes with the territory—ranging from the stress of therapy costs to the complexities of outings and marriage. It seeks understanding and empathy rather than pity, while acknowledging the constant presence of autism in daily life.