What does autism look like? I wish I knew. I spend most of my days longing to know. I have two children with autism. So, I could easily tell you what it looks like to parent someone with autism but, to actually spend a day in the life of autism...I’d give anything to know. That’s always been the hardest part of this journey for me. The not knowing. The disconnect. The wall that autism is between my children and myself. I can be right next to my daughter or son and still somehow be in an entirely different world. I could tell you how autism affects our family; the way it requires consistency and rigid schedules yet, at the same time, is unpredictable and chaotic. I could share endless stories of how autism has limited what we can do together as a family, or how it’s left us feeling completely alone no matter how big a crowd we’re in. I could share how, as a parent, autism leaves me completely exhausted and overwhelmed. How it’s broken my heart. How it’s left me feeling helpless and judged by everyone around me. I could share my wealth of knowledge on therapies, insurance company battles, or IEP meetings...but none of that would give you an understanding of what it’s like to truly live with autism.
From the outside looking in, autism seems terrifying at times. autism appears to be stressful, overwhelming, frustrating, and exhausting. From my point of view, autism is a constant struggle to relate to the world around you...an often lonely struggle. It’s a fascinating, complex and entirely unique existence; one of sheer brilliance and mystery.
Yet, again, I really don’t know what a day in the life of autism is like for my children; for anyone who has it. I am stuck in my world, desperate to fully understand.
What I can tell you is this: Autism, with all its ups and downs, has blessed my life. Autism has opened my eyes and softened my heart. Autism has humbled me and made me stronger. Autism has enriched my existence in a way I’d never be willing to let go of...because, though the hard days are harder than anything I could have ever imagined, the beauty of spending the days of my life with someone who has autism is one of the greatest gifts I’ve ever been given.