Lucy Jane Miller Ph.D., OTR
Founder & Research Director, Sensory Processing Disorder Foundation

At home every morning Benjamin screams, “I won’t go to school, I won’t.” Benjamin’s auditory sensory system is so sensitive that he can’t tolerate the noise from children on the playground. He hides with a pail over his head, covers his ears and sobs. When he is pushed unexpectedly, danger signals trigger reflexively and he slugs the child who accidentally touched him. His doctor says, “Don’t worry he’ll grow out of it.” His teacher says, “You should put him on medication, he’s a mess at school.” His aunt says to his mom, “Maybe a parenting class could help.”

Is Benjamin a bad kid, destined for juvenile justice or mental health systems? No. Benjamin has Sensory Processing Disorder (SPD), defined by a difficulty detecting, interpreting and/or responding appropriately to sensory input. Although the result looks like a behavior problem the cause is sensory. And SPD impacts the entire family.

Children with SPD often feel alone and scared. Empowering children with SPD requires educating their parents, teachers, doctors and others in their world. SPD is not due to mental retardation or to parenting issues. The disorder can cause emotional problems but it is not a mental disorder. SPD is a neurological condition.

SEE MORE: Shaping the Future: A Vision for Students with Disabilities
 

New research 

"Sensory Processing Disorder is not due to mental retardation or parenting issues. The disorder can cause emotional problems but it is not a mental disorder — SPD is a neurological condition."

Information about the neurological underpinnings of SPD has grown tremendously since in 1995 when the SPD Scientific Work Group was launched. The 50-member group of scientists produces rigorous research related to the validity of the disorder and the effectiveness of treatment. According to the SPD Foundation and other experts, research suggests that children with SPD have atypical white matter in the posterior part of the brain, inadequate sensory gating mechanisms and/or poorly modulated sympathetic nervous system responses. Research implicates familial factors as key, but not an exclusive cause of the disorder. SPD can exist in children with no other diagnosis, but SPD can also co-exist with other disorders such as autism spectrum disorder and ADHD. Estimates range from 69 percent to 90 percent in children with autism and from 54 percent to 69 percent in children with ADHD.

Empowering families

Individuals with SPD and their families need and deserve our support. Much of autism was misunderstood in the 1960s (blamed on aloof parenting), SPD is misunderstood in today’s world. We can empower families through education accurate diagnosis and early, intensive occupational therapy intervention for children with SPD. 

SEE MORE: Williams Syndrome: Strides Toward Inclusion in the Classroom
 

To create positive changes, families, teachers, doctors and others must be educated about what constitutes SPD and how to develop a sensory lifestyle to remediate sensory problems successfully.

A global and effective advocacy campaign would also empower families. Currently, insurance rarely covers services for SPD and many schools feel students with SPD do not qualify for assistance. We need to come together as a nation and fund research that will show the underlying mechanisms of the disorder and evaluate which treatments improve function. We need to support families with resources and tools to help them and their children.