I think something that people rarely recognize when they think of parents raising children who have autism is the profound loneliness that accompanies the disorder. You see, autism spectrum disorder is a general term for “a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication, and repetitive behaviors.”
People expect the flapping arms. They expect the lack of language and eye contact. They expect social awkwardness. But it goes so much deeper than that.
Often, we see these heartwarming videos of children with autism speaking for the first time. We hear stories of teenagers asking friends with special needs to the prom. We try to focus on the charities, the organizations, the good that we see. We think that the struggles come with the “tantrums” and “meltdowns” (two very different things, by the way) and the sensory cravings and aversions. We think that parents are overtired because “autistic kids never sleep” and we think that parents are in a constant state of grief over the parenting experience they thought they would have.
I’m not saying those things aren’t true. Because they are. But right now, they’re not the toughest struggle for me.
My biggest issue, and one I see that is consistently overlooked by those not living this same experience, is that I find myself for days at a time, unable to connect with my son. It has nothing to do with speaking. An infant can communicate by cooing, a toddler can drag his parent over to the cupboard to get out his favorite cookie. That’s communication. That’s connection. That’s one person showing the need for another. That’s one person recognizing another person is there. That’s one person acknowledging another.
And sometimes, for a person with autism, those are the things that go by the wayside.
When my mom, my dad, or my brother, or anyone in Jimmy’s family, walk into my house, William does not always react. He might look up at the sound of the knock on the door, or he might not. He might glance in the direction of the door as someone walks in, he might not. Typically, he is oblivious. Typically, he ignores. He continues stacking blocks or lining up puzzle pieces or reciting Moana lyrics or driving jeeps down the sides of the dining room chairs. He doesn’t say “Hi.” In fact, he is six years old and I’ve never seen him wave. He doesn’t usually address people by name until he is prompted. And even then, it’s like it’s a chore. Because somehow, some way, his brain does not register the merit in greeting people. His brain does not deem social interaction to be necessary and important. These are people he loves. These are people who love him. And he doesn’t even look up.
That’s hard sometimes. When I’m home with him, I try. I take out Legos. I stack blocks next to him. I empty bins of Mr. Potato Head pieces. I print out coloring sheets. I offer to go on walks. I play his favorite music. I teach him new games and repeat, “My turn, your turn” over and over, hoping it sticks.
Honestly? It’s kind of like I’m the desperate girl chasing after the guy who’s just not into me. Know what I mean? I know in my head it’s not true. But in my heart, it often feels that way. That hurts. Because I know he loves me. I know he wants me around. He could ignore me for five hours, but if I grab my purse to head out the door to the gym, all of a sudden he NEEDS to hold my hand. But for those five hours I was right there? Right next to him? Asking him to play? He doesn’t seem to care. Or he doesn’t know how to show he cares. Or to him, presence is enough and interaction is secondary and optional… Probably that one.
I love the book Autism Breakthough because it taught my husband and me to “join” with William. Instead of attempting to break him out of his scripting of television lines and song lyrics or to distract him from stimming, the author of the book encourages parental joining as an integral part of the interaction and connection process. That joining builds rapport. And it does work. When William reaches out his arm (it looks like “Heil Hitler” and makes me totally uncomfortable to mimic in public, but the things we do for our kids, right?) and then pulls it back and quickly flaps his right wrist, Jimmy and I do it with him. He watches us. He smiles. It’s like he’s saying, “You get it. You know how to do it. Let’s do it again together.” When he stacks all the red Legos in one tall, skinny tower and I add one to the pile, he looks at me as if to say, “Thank you.” I didn’t mess up the color pattern. I didn’t knock it over. When he recites the Mickey Mouse Clubhouse theme song or lines from Doc McStuffins, I finish what he starts and sing along. He laughs. Joining works. And it’s nice to have those small moments of connection, even if they’re not the typical, “Hey son, let’s go outside and play catch” and deep conversational moments one would expect to have.
Still, it’s the moments when even joining doesn’t work that get to me. It’s days like yesterday when I try to play in the same room as him—not even with the same toys—and he physically shoves me or yanks me by the arm into another hallway and returns to his space. It’s when he asks me over and over again for the iPad for the 15th time because he would rather stare at a screen than mold playdoh into shapes or play trains with his mommy. It’s when he retreats into what we call “William’s World” and nobody exists but him.
It’s watching my son pace back and forth in the same spot in the living room while I’m sitting at the kitchen table typing up a blog and thinking to myself, “I don’t know how to play with my son.” Those are the things that make me feel the most lonely, the most different.