Playdates, parties, meals at kid-friendly restaurants are the types of activities you'd expect to fill the days of a typical 3-year-old boy. But that's not the case for Charlie Phelps of Raleigh, North Carolina.
"We usually avoid restaurants," says Charlie's mother, Katie Phelps. "I don't do playdates because he could pitch a fit -- it's not unusual for him to throw himself into walls -- or wander off by himself. I don't want something to go wrong and for people to start seeing him in a different light."
She is thinking specifically of a Christmas party that ended in tears -- both Charlie's and hers. Her son, then 2, couldn't keep his eyes off the Polar Express train chugging around a miniature track. He had no interest in decorating cookies, playing with other kids, or doing anything that involved leaving the train. After about an hour, Phelps thought that stopping the train might encourage Charlie to join the party.
"All hell broke loose," she remembers. Charlie screamed with an intensity that most kids save for shots at the doctor's. Phelps tried explaining that the train was tired and needed a nap. She tried distracting her distraught son by telling him about the other fun activities. She took him outside, hoping the cool air would help. When Phelps was out of options and Charlie couldn't settle down, she decided it was time to leave. "He screamed and kicked like a bucking bull all the way home," remembers Phelps. He was still crying as she carried him into the house, but he managed to look up at her and say, "Mommy, you rock baby," referring to a calming ritual she'd created. Phelps brought her son to the recliner, held him tight and whispered "Rock, baby" in his ear repeatedly as they settled into the comforting motion of the chair.
"We did that for 45 minutes, and then he put his hand on my face and said, 'I so sorry, Mommy,' " says Phelps. "I put him to bed, went to the front porch, and bawled my eyes out."
Of course, every mom of a toddler could tell similar tales, but for Phelps this particular story is not an isolated incident. Charlie has these kinds of outbursts often: when the wheel he's watching on the grocery store cart comes to a stop, when another child gets near the toy he's playing with, or when Phelps tries to trim his fingernails or take him for a haircut.
Though frustrated by his behavior, Phelps hadn't wanted to make too much of it. "We just thought he was a difficult 2-year-old," she says. Friends and family seemed to shrug off these behaviors too, with comments like, "He is such a boy." But some of Phelps's relatives quietly questioned whether Charlie might have autism, and when he went to preschool, his teacher immediately noticed how strongly he objected when he was asked to transition from one activity to another. She suggested Charlie be observed by the county's early-childhood-education intervention services so that she could learn ways to help him. This led to a more formalized evaluation to test for suspected language delays.
As it turns out, Charlie was not diagnosed with autism, though he did have a language delay. An occupational therapist determined that his inability to go from one activity to the next and his penchant for ramming into walls was a result of sensory processing disorder (SPD), a condition that is common in children who have autism but also affects a surprising number of young kids who do not. Though recent studies show the condition impacts as many as 5 to 10 percent of kids, the mainstream medical community still has not officially endorsed SPD as a diagnosis -- which means that insurance won't cover therapy for it.
Understanding Autism: Sensory Issues
SPD affects the way a child processes messages sent to his brain from any of the five main senses -- sight, hearing, taste, smell, and touch. He might have mild sensory intolerances or he might find it extremely difficult to handle sensory stimulation (such as when he's at a busy grocery store or a loud sports event). Normally, if a child is tapped on the shoulder, his nervous system informs his brain that he received a light touch. For a child with SPD, the message can get misinterpreted and the child may feel that he was hit hard. Or the message may get completely lost, leaving him unaware that he's been touched at all, explains Lucy Jane Miller, Ph.D., founder of STAR Center, an SPD therapy and research facility in Greenwood Village, Colorado. Most kids with SPD are a mixture of both over- and under-sensitive, which explains why inconsistent behavior is a hallmark of the disorder, adds Lindsey Biel, an occupational therapist (OT) in New York City and coauthor of Raising a Sensory Smart Child.
Two lesser-known senses that can be affected by SPD are the vestibular and proprioceptive systems. They detect incoming sensory information, which is then delivered to the brain. Vestibular refers to movement sensations such as swinging or going down a slide. The proprioceptive system provides information to the muscles and joints, like telling the legs to apply more pressure when walking up stairs than when walking on flat ground, for example. If messages from the proprioceptive system get confused in the brain, a child might appear to be excessively clumsy or aggressive because he's not aware of how much force he's applying.
Continuously receiving jumbled messages can be frustrating for a child, and his inexplicable reactions to everyday happenings can be confusing to his parents. His behavior can become even more unpredictable when he's asked to transition from one activity to another, as was the case with Charlie. When a child's nervous system is working so poorly, it can take him a long time to focus and settle into what he's doing, explains Biel. Asking him to turn his attention to something new could be just too much for him.
Every child can have trouble shifting gears sometimes, but it's the number of senses affected and the severity of symptoms that will determine whether a child is considered to have SPD. Much as with autism, these symptoms occur on a spectrum. If a child's sensory needs are intense and persistent, everyday activities that are necessary for social, emotional, and educational growth might be difficult for him. This has repercussions down the line. For example, your child might not like the sensation of Play-Doh in his hands. This may not seem important, but manipulating squishy objects is one way kids develop the muscles and coordination to accomplish skills that will be necessary later, says Dr. Miller. A child who avoids using his hands in these developmental years may later have difficulty holding or maneuvering a pencil.