Sensational stars with autism.

"Earth to Jonny. Come in, please!" Those were my son, Stephen's, words to his older brother with autism, Jonathan. Back in those days, my "Little Rainman" was running in circles, flapping his hands in the air while covering his ears, and stripping the minute he came home from school to jump naked into the ball pit. What did all these behaviors mean? Were they a result of his autism or were they sensory?

Sensory processing refers to the way the brain takes incoming sensory messages, converts them into meaningful messages, then makes a response.

If the responses are disorganized or inappropriate given the sensory input, sensory processing disorder (SPD) may co-exist with autism. If a child has an occasional atypical response to sensation, he or she does not have SPD. Only when daily routines and activities or social participation are chronically disrupted by responses to sensation is the condition considered a disorder rather than a "sensitivity."

Confusion exists about the role that sensory processing plays in autism. While almost all children with ASD have some form of sensory atypicality, SPD and autism are not the same condition. A uniform sensory pattern does not exist in children with autism; rather, each individual exhibits different patterns. Some children have one subtype, while others exhibit behaviors indicative of several subtypes. Understanding how sensory factors impact your child can be confusing. This article briefly explains subtypes of SPD that frequently manifest in autism and provides a brief overview of treatment using occupational therapy with a sensory integration approach (OT/SI).

Sensory Modulation Disorder

Sensory modulation disorder is one of the classic patterns of SPD. A child with SPD has difficulty regulating his/her responses to typical sensory information. Three subtypes of sensory modulation disorder exist; in one, responses are too large, too quick. In another, responses are too small, too late. In yet a third, the responses appear to be a "craving" for sensation that the child never can satisfy. The three subtypes of sensory modulation disorder are described below.

1) Sensory Over-Responsivity

At first Jonny seemed like a quiet, good baby. He would gaze at the ceiling fan from his crib, while I was busy with my three toddlers still in diapers. I wondered why he arched himself away from me when I held him. When he went to school, he didn't hug me goodbye, which I took personally. Didn't he care about me?

During his birthday parties Jonny would escape the people and could have cared less about opening his presents.

You could count on one hand the foods Jonny would eat. Once, after the Burger King Whoppers were distributed, I heard a blood-curdling yell. "Somebody sabotaged my hamburger," and I saw tears streaming down Jonny's cheeks. We always had to eat right on time though because if we were a minute late, he threw a fit.

It was nearly impossible to get him to fall asleep and lack of sleep was affecting his schoolwork. Our behavioral consultant tried to develop strategies to get him to bed at night but with no success. Finally, we decided to ask him why he couldn't sleep, and he replied, "When the bed squeaks that means the springs need to be oiled." We got rid of the noisy bed the next day and haven't had a problem since.

Children with sensory over-responsivity (SOR), also called sensory defensiveness, respond too quickly, too intensely or for a long duration to sensory stimuli compared to typically developing children. Behaviors include: anxiety, fight or flight reactions, irritability, fussiness or moodiness, poor socialization, and difficulty forming relationships.

Sensory over-responsiveness can occur in one sensory domain, several, or all. For children with SOR, transitions are enormously challenging and frequently produce aberrant behavior such as meltdowns. Over-responsive children also go to the other extreme and "check out," creating a faraway world under their control.

When overwhelmed by too much sensory input, Jonny figured out a way to create his own isolated world.

In general with these children, occupational therapy focuses on lowering the child's arousal level so she/he can respond more typically to sensory stimulation. Play is the medium through which children are engaged and challenged. Over time, the behaviors performed in therapy begin to become automatic and generalize to other situations at home, at school, and in the community.

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2) Sensory Under-Responsivity

It was one of those snowy fall evenings. I dropped the kids at the swimming pool with their nanny. When I returned to pick them up, Imelda and everyone else at the Kinsmen Leisure Center were frantically looking for seven-year-old Jonny. We scanned the bottom of the pool and surrounding area, then called the police. By the time they arrived, I was a total wreck. The officer told me to calm down and asked if I'd called neighbors to see if Jonny went home. "That's crazy," I replied. "We live five miles away, and he is wearing his bathing suit. I'm sure he wouldn't be there." The officer told me he'd had situations like this before, and it was a possibility that should be checked out before dragging the lake.

When I called my neighbor, he reported that he had seen Jonny walk up our front steps barefoot in a bathing suit. When I got home, Jonny was in the bathtub. "Why did you walk home?" I asked. "I was worried sick."

"Don't worry, Mom. I took the back roads so strangers wouldn't get me. I'm okay!" He hadn't even noticed the snow on his feet, the cold on his little body.

Children with sensory under-responsivity (SUR) have less intense or fewer responses and take longer to process responses than typically developing children. Often children with SUR do not feel as much pain as typically developing children. SUR may cause a child to be socially withdrawn and prefer playing alone. Children with SUR live in an inner world and must be coaxed to notice the environment and people around them.

This disengagement is particularly noticeable with sensory events. The lack of engagement with sensory components of activities makes the child appear unaware. Children can be under-sensitive to one sensation (e.g., temperature) while being over-sensitive to another sensation (e.g., the light touch of a cloth).

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Even though it was cold out, the cold bothered Jonny less than the tactile stimulation of a blanket.

In treatment the occupational therapist uses play-based sensory activities to raise the child's arousal by increasing his ability to detect and respond to sensory input. Over time, his awareness of and participation in functional activities increases.

3) Sensory Seeking/Craving

Having many children has brought us into many social situations. Jonny would have preferred staying home but had to come along with the rest of us. To say he was a handful at these gatherings was an understatement. From climbing on the tables to temper tantrums, there was never a dull moment. One time we were at a church party, and Jonny continuously ran through a door with an EXIT sign, through the crowd, and out the other shouting, "EXIT." We left THAT party as soon as we could sneak away.

It wasn't uncommon to find Jonny squeezing himself under mattresses, sofa cushions, or climbing down the laundry chute. When Jonny was around six, our next door neighbors were brave enough to invite our family of eight to dinner. After being there for 15 minutes, we heard a panicked scream from the living room. "I'm stuck!" Jonny shouted. He had crawled inside a ceramic pot and was completely lodged. We tried to get him out, but it was hopeless. Finally, my oldest son, Matt, suggested we cut his shirt off and saturate him with oil so we could slip him out. Both dads struggled to pull him out, and he finally emerged with a big popping sound. Sensory seeking behaviors are common in children with ASD. These behaviors occur because normal activities of living do not provide enough stimulation in one or more domains. Some children seek movement, jumping, bumping, crashing, and bashing; others seek deep pressure, or spicy foods, or intense visual or auditory stimulation.

Dyspraxia (difficulty with motor planning)

In preschool, Jonny had a hard time planning what he would wear. Since he loved Archie, we made an Archie chart with a picture of Archie, along with his step-by-step instructions on what he needed to put on. At school, we used a similar chart so he would remember to get everything he needed before he left.

Another hurdle was Jonny's handwriting. In the interest of his studies, we got him an Alpha Smart mini word processing device to complete his assignments and encourage him to use his handwriting. Jonny, now 17, was asked by a teacher if he thought it was important to teach handwriting to younger children with autism. Jonny said, "Handwriting is important. After all, you don't always have your computer with you. Besides what if you need to write something, and you don't know how?"

Dyspraxia--difficulty with motor planning--has three elements: planning, sequencing, and actually doing the activity. Children can have trouble with one, two, or all three aspects. A child with dyspraxia may look clumsy and awkward, be slow to master new motor skills, and/or be able to accomplish each step individually but unable to put the steps together into a meaningful action. For example, a child can make horizontal, vertical, and circular lines but not be able to combine them into letters. He may be able to kick a ball and run but unable to run while kicking a ball, as needed for soccer. Many children with motor planning challenges are quite intelligent.

Occupational Therapy with a Sensory Integration Approach

Children with all subtypes of SPD are at risk. Occupational therapy (OT) is the treatment of choice. Labeled "occupational" because the therapist works on life "occupations," treatment focuses on making and keeping friends; succeeding at school; being part of a growing, loving family; and feeling self-confident.

Social participation was the ultimate "occupational" goal. Making friends and spending meaningful time with his siblings was our first priority with Jonny.

Short-term goals such as dressing, feeding, grooming, reading, writing, and understanding may also be appropriate in OT. In a single session, an OT's goals are more limited, but over time, OT makes a perceptible change in function.

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Many models of therapy exist. Our experience suggests that three times a week for a shorter duration is more likely to make major changes. With a "once a week for years" model, it is difficult to distinguish whether therapy or something else is making the changes. Short-term (e.g., 3-4 months) intensive treatment, followed by a break to enjoy natural activities, appears to create changes in a shorter time period.

A complete description of OT/SI is beyond the scope of this article. In brief, in the hands of a gifted therapist with advanced training, play is used to entice the child to engage in challenging activities that are specifically designed to regulate the child's arousal to sensation, to increase the child's motor skills, and to provide a platform for social participation, self-regulation and self-esteem outside the therapy session. Every session looks different because it is individualized to the child's needs and to the family priorities. Parent education to reframe behaviors and understand how to meet a child's needs within the context of a typical day should be a part of OT.

The Role of the Family in Providing Sensory Stimulation

Our large family has been a great blessing for Jonny. With so many children spanning 10 years, you might say we have a little "group therapy center" 24-7! Our family has learned to adapt to Jonny's sensitivities, without catering to them. When Jonny preferred computer time to active play, his brother Stephen suggested they both sign up for football; Jonny resisted. Nagging, pushing, and good old-fashioned peer-pressure finally won out, and they signed up for football together!

Episodes like these have built resiliency. We have learned patience, acceptance, compassion. Our family feels lucky to have learned from Jonny as he has helped shape our characters and has enhanced the quality of our lives.

Every family is different--with unique goals, values, resources, and priorities. Crucial is recognition of the primary role of the family in determining goals of therapy. Constant monitoring of family satisfaction and treatment effectiveness is essential. The best home intervention consists of activities that fit into families' natural routines such as mealtime, bath time, homework time, and bedtime. Much more consistency and success will come if the "sensory diet" is provided throughout the day by reasoning through the child's needs at the time rather than by following a prescriptive set of exercises.

Hope and help for sensational kids with autism is available. The goal is not "fixing" a child's autism; it is allowing the gifts of the child to shine so that joy and function are maximized. Be persistent, get educated about sensory processing, and become a sensational advocate for your child!

For more information and resources about autism and Asperger syndrome visit: www.AUTISMtoday.com and for more information on Sensory Processing Disorder visit www.STARcenter.us or www.SPDFoundation.net.

By Karen Simmons, Founder and CEO of Autism Today, and Lucy Jane Miller, PhD, OTR 

Karen Simmons, a mother of six children, one with autism and another with ADHD/NLD, is founder and CEO of AutismToday.com, an award winning information and resource center shining new light on autism and special needs worldwide by providing resources both on and off line. Karen's first book, Little Rainman, was inspired by her son with autism, Jonathan, now 17 years old, and still the life of the party! She is also the author of five other titles, The Autism Experience, Artism, Peace of Mind for Autism, Surrounded By Miracles and The Official Autism 101 Manual. She is the recent co-author of Chicken Soup for the Soul: Children with Special Needs with Jack Canfield and Mark Victor Hansen. Her next project is co-authoring "Autism Tomorrow" with Bill Davis. She lives with her husband, Jim Sicoli, and their six children, Kim, Matt, Christina, Jonathan, Stephen and Alex.

Lucy Jane Miller PhD, OTR is the Executive Director of the Sensory Processing Disorder (SPD) Foundation which focuses on research into the neuropathology and treatment of SPD. She also founded and directs the Sensory Therapies And Research (STAR) Center. where children, adolescents and adults receive a combination of occupational therapy and listening therapy for developmental and behavioral disorders such as ADHD, Autism, Learning Disabilities, Motor Disorders and SPD. Dr. Miller has the only full-time program of research into Sensory Processing Disorder in the world, funded by NIH, the Wallace Research Foundation, and individual, corporate and foundation donations. She is an Associate Clinical Professor of Pediatrics and Rehabilitation Medicine at the University of CO at Denver and Health Sciences Center and a Professor at Rocky Mountain University in the department of Pediatrics. Her book, Sensational Kids: Hope and Help for Children with Sensory Processing Disorder (Putnam Press) was published April 2006.