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SALT LAKE CITY — They won't wear clothes with tags or eat certain foods and even sunlight can bother them. These kids are often labeled as picky or diagnosed as having ADHD or autism spectrum disorder. But their sensory issues might be the result of sensory processing disorder (SPD) — a condition just beginning to gain recognition as a distinct disorder.
"I think in most cases the kids are misdiagnosed as behavior problems and unfortunately they are not getting the help they need," said Lucy Jane Miller, founder of the first comprehensive sensory processing disorder research program nationwide.
SPD is a condition that exists when the brain has trouble receiving and responding to information that comes in through the senses and sensory signals don't get organized into appropriate responses. This can cause a wide range of symptoms, including easy distractibility, hypersensitivity to sight, sound and touch.
The exact cause is not known, but there may be a genetic component.
Three-year-old Isabell and her mother, Emily Wessman, both have sensory issues.
"She doesn't play down here as much because it is such an open space," said Wessman while standing in her brightly lit basement. Isabell has a tough time in bright, open spaces so she has created nesting spots around the house to help her feel calm.
"She likes to climb in laundry baskets with lots of blankets and pillows around her," said her mother.
- Sensory processing disorder is a complex disorder of the brain that affects developing children and adults.
- Parent surveys, clinical assessments and laboratory protocols exist to identify children with SPD.
- At least one in 20 people in the general population may be affected by SPD.
- In children who are gifted and those with ADHD, autism and fragile X syndrome, the prevalence of SPD is much higher than in the general population.
- Studies have found a significant difference between the physiology of children with SPD and children who are typically developing.
- Studies have found a significant difference between the physiology of children with SPD and children with ADHD.
- Sensory processing disorder has unique sensory symptoms that are not explained by other known disorders.
- Heredity may be one cause of the disorder.
- Laboratory studies suggest that the sympathetic and parasympathetic nervous systems are not functioning typically in children with SPD.
- Preliminary research data support decades of anecdotal evidence that occupational therapy is an effective intervention for treating the symptoms of SPD. – from "Sensational Kids: Hope and Help for Children With Sensory Processing Disorder" (SPD), p. 249-250, by Lucy Jane Miller, Ph.D., OTR
Wessman is sensitive to light, sound and certain textures. "I can't touch cardboard. I can't touch dirt, flour. I like baking. I love to bake but I don't like the flour to touch my hands," she explained.
As a child, Wessman recalled being terrified that the teacher would ask her to solve a math problem. Not because she didn't know the answer. She feared the chalk.
"Anything that involved chalk would just paralyze me and I think that is part of the reason why I felt like I was dumb or not as smart as other kids," recalled Wessman, who actually has a high IQ.
Like most adults, Wessman has learned to adapt to her specific sensory needs. "I keep my sensory kit with me at all times." Items in it include wet wipes for her hands, sunglasses and earphones. "I wear these all the time and people think I'm just listening to my iPod but they help block out all the noise."
Children with SPD, however, are often thrown into situations that overwhelm them and are criticized for behaviors that do not conform.
"If by second grade you feel like a loser or a bad kid, then you are going to have a lot of trouble in life," said Miller. "If we can find these kids early while the brain is still plastic we could make major changes.
Miller said the thing that can make the biggest difference for a child with SPD is if they get support "for being who they are and what they need."
The best treatment for SPD requires no medication. Instead, occupational therapists target a child's specific sensory needs through therapy.
Occupational therapist Madelyn Mauer teaches a special workshop through Easter Seals-Goodwill in the Salt Lake area several times a year for parents and their children who have sensory issues.
"Sometimes it is a part of autism and is not specifically addressed because it is just thought of as autism," Mauer said.
- Infants and toddlers
- Problems eating or sleeping
- Refuses to go to anyone but me
- Irritable when being dressed; uncomfortable in clothes
- Rarely plays with toys
- Resists cuddling, arches away when held
- Cannot calm self
- Floppy or stiff body, motor delays
- Oversensitive to touch, noises, smells, other people
- Difficulty making friends
- Difficulty dressing, eating, sleeping, and/or toilet training
- Clumsy; poor motor skills; weak
- In constant motion; in everyone else's face and space
- Frequent or long temper tantrums
- Oversensitive to touch, noise, smells, other people
- Easily distracted, fidgety, craves movement; aggressive
- Easily overwhelmed
- Difficulty with handwriting or motor activities
- Difficulty making friends
- Unaware of pain and/or other people
- Oversensitive to touch, noise, smells and other people
- Poor self-esteem; afraid of failing at new tasks
- Lethargic and slow
- Always on the go; impulsive; distractible
- Leaves tasks uncompleted
- Clumsy, slow, poor motor skills or handwriting
- Difficulty staying focused
- Difficulty staying focused at work and in meetings
Pre-schoolers
Grade-schoolers
Adolescents and adults
Three-year-old Beau is extra sensitive to light, noises and textures but because he also has autism, his mother says his sensory needs were initially ignored.
"There were no resources for that at all," said Hillary Saravia. "If it is autism you can go to these places and you can read these books and maybe in there somewhere you will read a little bit about the sensory processing."
She and her son participated in Mauer's sensory workshop and found it made a remarkable difference for her son.
"Then we were able to get past some of these things that were annoying him and constantly on his mind and then focus on the behavioral and some of the academic things too."
SPD is tough to pinpoint because more than three-quarters of children with autistic spectrum disorders have significant symptoms of SPD, according to the SPD Foundation. However, most children with SPD do not have an autistic spectrum disorder.
A study last year out of the University of California San Francisco showed kids with SPD have decreased structural brain connections in specific sensory regions different that those who only have autism. The report stated, "Children with SPD remain critically underserved with regard to their developmental challenges in our society due to the lack of a diagnostic label recognized in the current DSM 5 manual."
Miller has been fighting for a diagnostic label for SPD for nearly two decades. "We got accepted but then at the last minute they turned around the acceptance the committee recommended and they said we were not accepted."
She recognizes the concern doctors and parents have for labeling or over-diagnosing quirky behaviors a child may eventually outgrow. "I think we are overreacting and under-reacting at the same time. So there are some children who perhaps just need more movement and maybe we are overreacting, but I think in most cases the kids are misdiagnosed."
