Asperger’s Syndrome is a mild form of autism, and in my daughter’s case is accompanied by a host of sensory issues. People with the disorder look typical. They have normal or even flowery vocabularies and speech patterns. They may say things in an interesting or different way, but they say them. This is different from those with moderate to severe autism, who often have minimal vocabularies or are completely non-verbal, staying lost in their own world to escape one that is constantly overwhelming. I’m thankful my daughter’s autism is mild. I am. I’m thankful from the top of my head to the tips of my toes that she can stay in this world most of the time. I feel it, the thankfulness, pulsating in me when I see her speak to other children or run outside to swing or play tag. I breathe a deep sigh of relief when there is a sudden noise, and she is finally able to take it in stride. A warmth washes over me when she says she loves me more than anything, knowing it’s the absolute truth because Aspies don’t generally use hyperbole. Months of therapy and years of interventions have given us this typical-looking child. I don’t take her simple, everyday accomplishments for granted.
But her autism doesn’t feel mild when she is rocking back and forth or staring at the wall. It doesn’t feel mild when she runs her finger along an imaginary line over and over again. It doesn’t feel mild when, after 6 years of trying, she still can’t go take a shower without feeling overwhelmed from the water touching her face. It doesn’t feel mild when she picks the skin off her arms or has a panic attack when attempting to taste a drink that isn’t water. It feels anything but typical when she says she is going to her “squeezy area”, which means she is going to wedge herself between her bed frame and the wall because it feels like a hug from me. (I offer the hug instead, but she says I can sit by her while she squeezes herself.) It doesn’t feel mild when she tics so bad that she can’t read or sleep without wedging a sensory ball under her chin. And it certainly doesn’t feel mild when her teacher emails me to let me know she has gnawed her own arm in class and was sent to the school nurse for ice chips to bite instead. It feels pretty extreme when she comes to me at 5:30 on a Tuesday evening with tears in her eyes, begging me to take her to a doctor because she can’t stop her “bad habits”.
I remember when she was a baby. I woke up every morning thinking today will be different. I checked my tension and stress at her bedroom door, took a deep breath, and said, “Good morning, baby! “ in the sweetest mommy voice I could muster, despite the fact that she was already screaming and I didn’t understand why. Years later, I’m still doing it… taking a deep breath and pushing forward. Today can be different, I tell myself. Today can be better, and I choose joy. I choose to believe this disorder isn’t a life sentence. Some days I believe it and some days I don’t. But I choose it anyway… because she doesn’t stand a chance if I don’t. So get out of my way, “mild” autism. We are busy living the good life. My plate is full of happiness, even if it comes with a side of autism.