Carrying the Hope
Parenting a child with Asperger's
by Alexandra Solomon
"Mom, you have to come and look at my poop!" Brian yells, running back into the office where Fran, his therapist, and I are patiently awaiting his return. His blue eyes are shining, he grins from ear to ear. He gestures to me ("Come here!") and then runs and grabs my hand. When I arrive at the potty, I glance at the specimen and then at Brian. His eyes are glued to me, anticipating my reaction. I smile, he laughs and spreads his arms wide, "It's the longest snake ever!"
Such a moment might not strike everyone as so wonderful, but to me it's utterly amazing—on so many levels. When he was 26 months old, Brian—now 6½—was diagnosed with PDD-NOS (pervasive developmental disorder, not otherwise specified), an autism spectrum disorder (ASD) falling somewhere between autism and Asperger's Syndrome. Although, even then, he was considered "high-functioning," he was dealing with some significant problems for such a little guy. He had painfully sensitive ears (auditory hypersensitivity), no interest in other kids, aggressive behavior toward himself and others, scripted language, limited play skills, chronic diaper rashes, and continual gastrointestinal problems, vacillating between constipation and diarrhea.
Now, at 6 ½, thanks to intensive early intervention that was truly biopsychosocial in nature, he's making great strides. Not only have his physical and medical problems improved dramatically, but he's competent enough at relationship skills to want to show me something he made, to figure out how to get me to come see it, to wait for my reaction, to celebrate with me, and summarize the whole event with a declarative statement.
When Brian asked me to come and look at his poop, he wasn't trying to get me to do something for him or to make something happen. He wanted me to share an experience with him purely to share it. He used gesture, engaging in nonverbal communication both receptively and expressively, which even six months earlier he simply couldn't do. This level of social referencing (defined as the ability to read, recognize, interpret, and respond to others' facial expressions and tones of voice), coordination, and experience-sharing is extraordinarily difficult for a child with an ASD. Odd as it may sound to those unfamiliar with this disorder in kids, what Brian did is a very, very big deal.
Brian's first year of life was unremarkable—marvelous to his mom and dad, of course, yet unremarkable. He met all of his early milestones on the late side of normal and was social and sweet. At his 15-month well-child visit to the pediatrician, he received a clean bill of health and (I now believe) a fateful combination of two vaccinations: the measles, mumps, and rubella (MMR) shot and a flu vaccine. After the vaccinations, he spent the next three months sick more often than he was well. He battled bout after bout of diarrhea and became ultrasensitive to sound. He seemed tense a lot of the time and preferred repetitive solo play, pulling the books off his shelf and "reading" through them over and over in the same way. He also started to pull hair—my hair and that of the moms and kids at music class. He didn't seem angry when he did it, just tense.
However, by 18 months, he could count to 100, knew all of his letters, and was beginning to do phonics ("Brian, what letter does Ôlavender' start with?"). Nonetheless, at his 18-month visit, I asked his doctor how I would know if he had autism. She said, "Does he point?" I said, "Yes." She said, "He doesn't have autism." I was relieved.
As I look back on this interaction, I realize how much the doctor really missed the mark with her cursory screening attempt. Brian did point ("Where's the cow?" I'd ask, and he'd obligingly point at the cow in the picture), but he wasn't demonstrating joint attention in an age-appropriate way. Joint attention, a readily mastered milestone for a neurotypical child, means that the child looks at something—say, a balloon that's captured his interest—then at mom to make sure she sees it, and then back at the balloon. An attempt to join his attention with another's is lacking in a child with ASD, and it's an important diagnostic indicator.