What It’s Like Living With Autism
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What It’s Like Living With Autism

Ah, autism. Such a complex subject. Ask ten autistic people what it’s like to live with it and you’ll get ten different answers — some might not even be able to answer the question at all. My son, Charlie, who’s autistic, can’t answer you. He doesn’t communicate like that, and wouldn’t even understand the question.

Being autistic and raising a severely autistic child gives me a unique perspective on the subject of autism. I see both sides of the spectrum every day: I personally live with the struggle of a disability that’s often ignored because it’s not obvious, and I’m fighting each day to take care of my child whose differences are extreme and apparent. People on the autism spectrum all have different strengths and struggles, and the severity of those vary greatly. That’s why it’s called a spectrum.

Though I can’t tell you what autism feels like for everyone, I can tell you what living with autism is like for me. Before I was diagnosed, I’d always thought that something was wrong with me. I felt disconnected from the world around me — misunderstood. It was as if I lived in a different dimension, being in the same room as other people but feeling like I didn’t belong. I still often feel this way, but knowing why I feel different helps me deal with the overwhelming emotions that come from that lonely feeling.

Autism comes with many challenges, my biggest ones having to do with social communication, sensory issues, and repetitive behaviors. For example, routine activities like going to the grocery store can turn into a type of torture for me. I wonder if neurotypical people notice how many annoying, intrusive noises there are in a grocery store. Carts rattling on the floor, the incessant chattering from all directions, children zipping by, the ongoing background music, and that damn bag of potato chips, crackling, crackling, crackling…  

The constant bip bip bip of the cash registers sends me jolting. Because these bips aren’t predictable and don’t follow a pattern, they drive me crazy. Even though I try really hard to navigate the labyrinth of people and their carts (all while avoiding people’s gazes), I inevitably start bumping into things, spiraling the discomfort further. To me, being able to effortlessly navigate a grocery store seems like a superpower. How do they not feel incredibly overwhelmed? I envy them.

But the hardest part of having autism for me is the social aspect. We all struggle at one point or another with forming or maintaining a relationship, but for many autistic people like me, it’s an ongoing and severe issue. I struggle to find my place socially. I tend to be either so closed-off that people think I’m rude, or so outgoing and peppy that I’m a weirdo, oblivious to social norms. It’s hard for me to find a balance between the two.

Though I’ve learned the theory of how to behave socially thanks to experience, therapy, and books, putting rules into practice is a different story. That’s when the overthinking comes in. Because so much work goes into social interactions, I have to ask myself these oh-so-important questions. Did I screw up? Did I talk too much? Maybe not enough? Was I wearing the right clothes? Was my text too needy? Too direct? Was I supposed to lie about that thing to make them happy? It was inappropriate to smile when Becky told her story, wasn’t it… Was I supposed to furrow my brows instead? Did my facial expression match what I was thinking?

While autism affects my life in ways that sometimes get in the way of my happiness, it’s also a strength. I’ve had to fight my entire life to find my place, to understand why the world was more complicated to me than other people. It made me stronger. TC mark

Eileen Lamb

Founder of The Autism Cafe, writer, photographer, mother, and author of All Across The Spectrum.