Fragile X Syndrome, a congenital disorder, is caused by a mutation in a gene that makes up the X chromosome. More boys than girls are affected. Sensory processing issues may include over- or underresponsivity to sensations, such as touch, movement and sounds; sensory-based motor difficulties, affecting body awareness, motor planning and coordination; and problems with sustaining attention and regulating arousal level.
Fetal Alcohol Syndrome (FAS), or Fetal Alcohol Effects (FAE), is a nongenetic disability: it is noninherited and is preventable. It affects the baby whose mother drinks alcohol during pregnancy. The child may be small and have physical abnormalities of the face, bones, and organs. He may have difficulty taking in sensory information, processing it and making adaptive responses, especially in social situations. He may withdraw from touches and sounds, simultaneously seeking movement. Sensory issues may lead to speech and language delays, emotional instability, hyperactivity, and learning disabilities.
Syndromes that coexist with SPD—and often go misdiagnosed—include Angelman, CHARGE, Dandy-Walker, Ehlers-Danlos, Prader-Willi, Russell-Silver, Smith-Lemli-Opitz, and Williams. For children with these syndromes, occupational therapy using a sensory integration framework can improve motor, social, and language skills. Other therapies, including physical therapy and speech/language therapy, may help as well, especially when they include sensory integration.
Allergies
SPD often coexists with allergies. The child may suffer from allergic reactions to dust, pollens, molds, grass, fur, and, of course, foods. The casein in dairy products and the gluten in wheat are the big culprits. Additionally, the chemicals in food, medicines, and the air we inhale may be toxic for the child with a sensitive system. These allergens can harm his developing nervous system, causing learning and behavior problems.
In her classic books, Doris Rapp, MD, discusses the predominant symptoms of allergies, including the allergic nose rub (“allergic salute”), red circles under the eyes (“allergic shiners”), irritability, depression, aggression, and under- or overresponsiveness to sensory stimulation, particularly sound and touch.
Medicine is not the antidote. The solution for many children is identifying and eliminating irritating foods, such as milk or wheat, and environmental irritants, such as stuffed animals and mold. Try it—and watch how many symptoms associated with allergies and sensory processing disorders clear up dramatically, and without side effects.
POSSIBLE CAUSES OF SPD
The problems discussed above may coexist with SPD but do not cause it. The cause may be one of these factors:
1) A genetic or hereditary predisposition, often the case if the child’s parent, sibling, or other close relative has some SPD
2) Prenatal circumstances, including:
• chemicals, medications or toxins like lead poisoning that the fetus absorbs
• the mother’s smoking or drug or alcohol abuse
• unpreventable pregnancy complications, such as a virus, a chronic illness, great emotional stress or a problem with the placenta
• multiple births (e.g., twins or triplets)
3) Prematurity or low birth weight
4) Birth trauma, perhaps due to an emergency cesarean section, a lack of oxygen, or surgery soon after birth
5) Postnatal circumstances, including:
• environmental pollutants
• excessive stimulation, such as child abuse or warfare
• insufficient stimulation and limited opportunities to move, play, and interact with others
• lengthy hospitalization
• institutionalization in an orphanage, such as in Romania or another Eastern European country
6) Unknown reasons
Exciting research is answering many questions about the disorder. Dr. Ayres’ explorations, decades ago, laid the foundation for current research, such as sophisticated quantitative or functional brain imaging studies that demonstrate anatomical differences in the brains of out-of-sync children. As researchers make clearer distinctions among those with sensory issues, increased knowledge about the roots of SPD will lead to the most effective interventions.
WHO HAS SENSORY PROCESSING DISORDER?
On a bell-shaped curve of humanity, some people have a poorly integrated neurological system, some have an excellent one, and the rest of us fall somewhere in the middle.
Think about people who are graceful and popular, like ballerinas, athletes, charismatic politicians, and delightful children. These people may be blessed with exceptionally efficient sensory processing.
Now, think about people you know who have problems functioning in certain aspects of their lives. They may be clumsy, have few friends, or show neither common sense nor self-control. They may have SPD.
SPD is on a continuum, says nutritionist Kelly Dorfman. At one end of the continuum, some people have mild dysfunction that affects their self-regulation.
At the far end of the continuum, many people with autism have severe sensory processing issues, further complicating their profound difficulties with learning, communication, and relationships. Along the SI continuum are those with ADHD, Asperger syndrome and other pervasive developmental delays.
We know that SPD intensifies the bigger problems of children with the disorders, syndromes and environmental conditions mentioned above. For all these children, remediation of their sensory issues through occupational therapy has an overall, positive effect.
We also know that some “normal” children, who are not regarded as having any significant or diagnosable problems, have SPD. These children, whom intervention also helps, are the focus of this book.
What percentage of “normal” children is challenged by inefficient sensory processing? Statistics are slippery and depend on the criteria used. In 1979, Dr. Ayres estimated that 5 percent to 10 percent of children have sensory processing problems significant enough to warrant intervention. In 2004, a study to determine the prevalence of SPD provided a similarly conservative estimate. Based on my anecdotal observations as a teacher, I guesstimate that the numbers are higher—more like 10 percent to 15 percent.
Occupational therapists commonly note that approximately 80 percent of these children are boys, but this statistic is open to dispute. Many professionals believe that girls are just as likely as boys to have neurological disorders, including SPD, ADHD, and learning disabilities. Girls, however, frequently do not display the same behavior problems that attract attention, so they tend to go unnoticed—and to fall through the cracks.
Should we be alarmed by the increasing numbers of children identified as having SPD? Are we indiscriminately sticking labels on children? Are we just “looking for something wrong”?
No, no, no!
In fact, identifying children with SPD is a positive step. As we learn more about the mechanics of the human brain, we are finally understanding why some children are out of sync. And now—we can do something to help!
DON’T WE ALL EXPERIENCE SOME SENSORY PROCESSING PROBLEMS?
From time to time, we all experience some problems processing sensations. Too much or too little sensory stimulation confuses the brain and can cause temporary discomfort. Illness, fatigue, and stress can also interfere with smooth functioning.
For example, attending a noisy, crowded party can be overwhelming. Taking a bumpy airplane ride can overload your brain with rapid movement sensations. Lingering in bed with the flu can prevent you from receiving sufficient movement experiences and make you feel weak. Walking from a well-lit room into a dark closet can deprive your eyes of light and therefore your brain of visual sensations.
Not being in control of oneself is very unpleasant, but an occasional disorganizing experience is normal. It is when the brain is so disorganized that a person has difficulty functioning in daily life that the person is diagnosed as having Sensory Processing Disorder.
SAMPLE SENSORY-MOTOR HISTORY QUESTIONNAIRE
Below is a sample questionnaire similar to those that parents or teacher
s complete when a child begins to be evaluated by an occupational therapist. A questionnaire helps the therapist learn about the child’s sensory-motor history. After analyzing it, the therapist determines whether the child needs treatment and, if so, uses it to design an individualized program, or sensory diet (see Chapter Nine).
This questionnaire was designed by Sharon Cermak and Alice Miller at Sargent College, Boston University, in the 1990s. It is applicable to all children today, although its original purpose was to examine the sensory processing characteristics of children who have been adopted from Eastern European countries. The questionnaire is based on the work of Winnie Dunn, PhD, and the therapists at Occupational Therapy Associates-Watertown, PC, and is abbreviated here with their gracious permission.
Take some time to study the questions. They will help you understand how sensory processing affects your child’s overall development. Some questions pertain to the child’s responses to sensations, including touch, movement, vision, hearing, taste, and smell. Other questions pertain to the child’s self-regulation and behavior, including activity level, feeding, organization and attention, sleeping, and social-emotional skills, all of which are strongly influenced by sensory processing.
Before picking up your pencil, you may want to make a few clean copies of the questionnaire to share with your child’s teacher, caregiver, or grandparent. (Most of the questions are applicable to preschoolers and elementary age children.) Many checks under the “Often” column suggest that SPD affects your child and that a professional diagnosis is in order.
SENSORY-MOTOR HISTORY QUESTIONNAIRE FOR PARENTS OF YOUNG CHILDREN
Prepared by Sharon Cermak, EdD, OTR, et al.
SENSES
I. Touch: Does your child…
1. Avoid or dislike getting hands messy?
Often____ Sometimes____ Rarely____
2. Become upset when face is washed?
Often____ Sometimes____ Rarely____
3. Become upset when having hair combed or fingernails cut?
Often____ Sometimes____ Rarely____
4. Prefer long-sleeved clothing or jackets, even when it is hot?
Often____ Sometimes____ Rarely____
5. Avoid wearing clothes made of certain fabrics?
Often____ Sometimes____ Rarely____
6. Have trouble changing clothing when seasons change?
Often____ Sometimes____ Rarely____
7. Avoid going barefoot, especially in sand or grass?
Often____ Sometimes____ Rarely____
8. Become irritated by tags on clothing?
Often____ Sometimes____ Rarely____
9. Complain if socks are not on correctly?
Often____ Sometimes____ Rarely____
10. Complain about bumps on bed sheets?
Often____ Sometimes____ Rarely____
11. Seem to crave being held or cuddled?
Often____ Sometimes____ Rarely____
12. Express discomfort when touched in a friendly way by others?
Often____ Sometimes____ Rarely____
13. Prefer to touch others rather than be touched by them?
Often____ Sometimes____ Rarely____
14. Tend to bump or push others?
Often____ Sometimes____ Rarely____
15. Seem excessively ticklish?
Often____ Sometimes____ Rarely____
16. Seem overly-sensitive to pain, and be bothered by small cuts?
Often____ Sometimes____ Rarely____
17. Show an unusual need to touch certain textures, surfaces, toys?
Often____ Sometimes____ Rarely____
18. Mouth objects or clothing often?
Often____ Sometimes____ Rarely____
19. Have difficulty judging how much strength to use, e.g., petting animals with too much force?
Often____ Sometimes____ Rarely____
II. Movement: Does your child…
1. Become anxious or distressed when feet leave the ground?
Often____ Sometimes____ Rarely____
2. Avoid climbing or jumping?
Often____ Sometimes____ Rarely____
3. Appear reluctant to participate in sports and motor games?
Often____ Sometimes____ Rarely____
4. Seem fearful of catching balls?
Often____ Sometimes____ Rarely____
5. Show fear of falling or heights?
Often____ Sometimes____ Rarely____
6. Dislike elevators or escalators?
Often____ Sometimes____ Rarely____
7. Dislike riding in a car?
Often____ Sometimes____ Rarely____
8. Dislike activities where head is upside down (as with hair washing) or when lifted overhead (as in somersaults)?
Often____ Sometimes____ Rarely____
9. Love to be tipped upside down or lifted overhead?
Often____ Sometimes____ Rarely____
10. Seek out all kinds of movement activities?
Often____ Sometimes____ Rarely____
11. Enjoy merry-go-rounds and fast rides?
Often____ Sometimes____ Rarely____
12. Jump often and for a long time on beds or other bouncy surfaces?
Often____ Sometimes____ Rarely____
13. Like to spin himself/herself?
Often____ Sometimes____ Rarely____
14. Rock his/her body or head?
Often____ Sometimes____ Rarely____
15. Bang head on purpose?
Often____ Sometimes____ Rarely____
16. Throw him/herself against floor, wall, or other people for fun?
Often____ Sometimes____ Rarely____
17. Take unusual risks during play?
Often____ Sometimes____ Rarely____
III. Visual: Does your child…
1. Become easily distracted by visual stimulation?
Often____ Sometimes____ Rarely____
2. Express discomfort at bright lights?
Often____ Sometimes____ Rarely____
3. Avoid or have difficulty with direct eye contact?
Often____ Sometimes____ Rarely____
4. Have a hard time picking out a single object from many, such as finding a specific toy in a toy box?
Often____ Sometimes____ Rarely____
IV. Auditory: Does your child…
1. Become distracted or have a problem when surrounded by a lot of noise?
Often____ Sometimes____ Rarely____
2. Respond negatively to unexpected or loud noises?
Often____ Sometimes____ Rarely____
3. Like to make loud noises?
Often____ Sometimes____ Rarely____
V. Taste and Smell: Does your child…
1. Explore objects by smelling them?
Often____ Sometimes____ Rarely____
2. Seem bothered by smells that most other people do not notice?
Often____ Sometimes____ Rarely____
3. Chew or lick nonfood items?
Often____ Sometimes____ Rarely____
SENSORY-RELATED SKILLS
I. Activity Level: Does your child…
1. Tend to be especially active and always on the go?
Often____ Sometimes____ Rarely____
2. Tend to fidget excessively in a chair when eating or working?
Often____ Sometimes____ Rarely____
3. Tend to lack carefulness and to be impulsive?
Often____ Sometimes____ Rarely____
4. Seem aggressive in play?
Often____ Sometimes____ Rarely____
II. Feeding: Does your child…
1. Need assistance to feed himself/herself?
Often____ Sometimes____ Rarely____
2. Tend to eat in a sloppy manner?
Often____ Sometimes____ Rarely____
3. Frequently spill liquids?
Often____ Sometimes____ Rarely____
4. Drool?
Often____ Sometimes____ Rarely____
5. Have trouble chewing?
Often____ Sometimes__
__ Rarely____
6. Have trouble swallowing?
Often____ Sometimes____ Rarely____
7. Have difficulty or dislike eating foods with lumps, such as chunky soups?
Often____ Sometimes____ Rarely____
8. Stuff or put too much food in his/her mouth at once?
Often____ Sometimes____ Rarely____
III. Organization: Does your child…
1. Frequently lose things, such as homework or coat?
Often____ Sometimes____ Rarely____
2. Get lost easily?
Often____ Sometimes____ Rarely____
3. Have difficulty tolerating changes in plans or expectations?
Often____ Sometimes____ Rarely____
4. Have difficulty changing from one activity to another?
Often____ Sometimes____ Rarely____
5. Need extra assistance to get started with a task or activity?
Often____ Sometimes____ Rarely____
6. Become easily distracted while working or playing?
Often____ Sometimes____ Rarely____
7. Have a short attention span?
Often____ Sometimes____ Rarely____
IV. Sleeping: Does your child…
1. Have irregular sleep patterns?
Often____ Sometimes____ Rarely____
2. Wake frequently during the night?
Often____ Sometimes____ Rarely____
3. Have a difficult time falling asleep?
Often____ Sometimes____ Rarely____
4. Require less sleep than other children?
Often____ Sometimes____ Rarely____
V. Social-emotional: Does your child…
1. Have trouble getting along with other children his/her age?
Often____ Sometimes____ Rarely____
2. Seem overly sensitive to criticism?
Often____ Sometimes____ Rarely____
3. Seem overly anxious or fearful?
Often____ Sometimes____ Rarely____
4. Tend to be quiet or withdrawn?
The Out-of-Sync Child Page 6