Part of the JKP Essentials series
Paperback: £12.99 / $20.95
2007, 246mm x 173mm / 10in x 7in, 160pp
ISBN: 978-1-84310-521-3, BIC 2: JNS
Chapter 1: Introduction
What are Regulation Disorders of Sensory Processing?
Human infants are able to maintain an internal equilibrium by modulating sensory stimulation from the environment. Their regulation capacities include the ability to modulate the intensity of arousal experienced while remaining engaged in an interaction or being able to disengage easily from an activity.
Regulation capacities increase with age and by age six most children have learned to adjust their behaviors and sensory needs. However, infants and toddlers with Regulation Disorders (RDSP) may continue to have mild to intense difficulties in some areas of their sensory, motor and behavioral regulation throughout their childhood.
It was recognition of the persistent characteristics of these difficulties that established Regulation Disorders of Sensory Processing (RDSP) as a diagnostic category within early childhood disorders. The presence of sensory reactivity, motor and behavioral patterns across settings and within multiple relationships characterize this disorder (Diagnostic Catergory [DC]: 0-3R, ZERO TO THREE 2005).
Long before a clinical diagnosis is made, astute parents of a child with RDSP have observed that their child does not react like other children of the same age, or how their siblings responded at a similar age. Questions the parents may ask before they received a diagnosis are: "Is there something really wrong? Is it a phase? Is it just my child's temperament? My child is really bright; how can there be this other aspect to his behavior and reactions? Do I have to place him in a specialized school environment? How can I help him to have joy in his life?"
Parents' own instincts that there is something unusual with their child's responses are often negated by those around them. Friends, relatives, and passing strangers frequently offer their advice and observations about the cause of the child's behaviors, saying, "Have another one and that will sort him out", "It's your first child…", "You are spoiling your child", "You are doing it wrong", "You are over-focusing because he is the first boy…"
Medical professionals may respond by suggesting it is a stage the child is going through or that the child will "grow out of it."
However, parental descriptions of their children indicate a spectrum of symptoms that exceed those of typically responding children.
During infancy, parents describe their children as active, fussy, rigid, and having excessive crying, sleep problems, eating problems and touch sensitivity, as well as experiencing "colic-like" behaviors for their whole infancy. These babies are ones that need complete darkness to sleep, need to be driven around in a car for the vibration or "white noise" effect to help them calm, and are hypersensitive to sound and images. They may also have difficulty regulating their eating and elimination patterns, and difficulty self-calming generally.
During toddler and preschool years, parents relate that their children demonstrate a lack of awareness of personal space, safety and judging distances, experience tactile and noise sensitivity, fine motor problems, food allergies, excessive movement in sleep, and night terrors. The children sometimes are advanced in cognitive areas but often have poor social skills, seek out and play better with younger or older children and desperately want control of their environment. Although they may be engaging and charming, they can rapidly switch to violent outbursts or reactions manifested as aggression or negativity. Their conversational ability may be high but they may have slow speed in completion of goal-directed activities.
As the children become older preschoolers, the parents report that the children have difficulty tolerating the feeling of certain clothes, have difficulty with temperature control, and may perspire a lot. They want to eat only certain foods, are fearful of the flushing of the toilet, or hate to have their teeth or hair brushed or cut. These children may also become perseverative and get stuck in a play routine, repeating the same play over and over, or only play with certain toys. They may fear the unknown, such as when they see a Santa Claus or a clown, as the distortion of the human image is confusing for them. They may crave the feeling of gravity - and enjoy swinging and rides at amusement parks for long periods of time.
During primary school years, the parents describe that their children have difficulty with transitions, are reactive to noises and touch, and demonstrate more fine and gross motor problems compared to their peers. They may make impulsive responses, which are frequently interpreted as aggressive behavior, and exhibit poor social skills. Because of impulsivity and aggression, it is difficult to include them in shopping or many outside events. Their difficulty with perspective taking and their own bossy and aggressive behaviors result in few sustained friendships. Although they can attend to play for short periods of time, their play then shifts, and may be interrupted by their constant craving for personal attention. The children can not stand to lose face or be wrong, but they can find something wrong in everything. They may have obsessive behaviors where they over-focus or are preoccupied with a certain method or behavior, although they often are verbally adept.
Although parents can describe many troubling aspects of their children, these children are difficult to describe precisely or define because they change from day to day and are complex and individual in their sensory and behavioral responses.
However, to assist professionals and those who work or play with the child, it is often helpful to have a specific diagnosis that matches a clinical description.
A clinical description of Regulation Disorders
In both the International Classification of Diseases (ICD-9-CM) and the Diagnostic and Statistical Manual Text Revised (DSM-IV-TR), there is no description or provision for the diagnosis of Regulation Disorders/Regulation Disorders of Sensory Processing.
This diagnosis is a category in the DC: 0-3R, Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood, which is a diagnostic manual produced by the ZERO TO THREE organization. Recently revised (2005), the disorder is now called Regulation Disorders of Sensory Processing, to emphasize that difficulty in sensory processing is a pivotal symptom observed in these disorders.
When establishing the diagnosis within infants, clinicians looked at the babies that used to be called "fussy" or "colicky" babies in infancy and early childhood.
They recognized that the concept of regulation was important and that development of regulation of mood, impulse, and an internal state of regulation was an essential developmental process. When Dr. Georgia DeGangi, Dr. Serena Weider, Dr. Winnie Dunn and Dr. Stanley Greenspan began focusing their work in the area of children under the age of four, they provided insights into the development and interactions of attachment, emotional regulation, and internal regulation. The diagnosis of RDSP has been supported within their research and the research of other clinicians during the last ten years.
RDSP is not designated as a diagnostic category by exclusion (if it is not that, then it is this). It represents a definite entity that requires a distinct behavioral pattern for diagnosis. The diagnosis is not related to a child's intelligence but rather to a pattern of responses and behaviors observed over time. Sensory, motor (gross and fine motor), physiological (sleep, eating and elimination), behavioral processing and organizational (attention and affect, and overall behavior) responses are all considered. (Sleeping and eating difficulties can be considered symptoms of RDSP or as separate problems.) The disorders affect daily adaptation, interactions and relationships (DC: 0-3R 2005).
Regulation Disorders - what causes them?
RDSPs are most evident in infancy and early childhood. The causes are unclear. Each child has his individual sensory, motor, physiological and behavioral processing and organizational pattern and needs. The child with RDSP has more accentuated patterns in one or many of these areas.
Symptoms of infants with RDSP are not static and evolve over time. Early detection may therefore prevent more serious, long-term perceptual, language, sensory integrative and behavioral difficulties. Parents and others involved with the infants or children need to know that RDSPs are multifactorial in origin. The theories range from having an overlap with difficult temperament (DeGangi et al. 1993) to speculations about atypical central nervous system functioning.
Parents are often surprised that all the children in their family show some type of regulation difficulties, either sleep, feeding or sensory issues. That observation often gives rise to fears that RDSP may be a genetic disorder. At the time of writing, there are no literature references to support this notion.
The behavioral responses of infants, toddlers and children with RDSP are easily misinterpreted and causes misattributed. The toddler or child with RDSP is not hyperactive, aggressive or oppositional as judged on an overall behavioral response but may demonstrate these behaviors because of difficulty in emotional regulation related to specific sensory responses. They are often on an emotional roller-coaster rather than having persistent negative emotional responses.
Research in the causes and stability of Regulation Disorders
Fortunately, new findings on self-regulation capacities of infants and young children are emerging. Some clues that point toward physiological and central nervous system adaptability are important to discuss. We would like to remind readers that not all the work mentioned here is specific to RDSP. It does, however, help to explain some of the peculiarities and sensitivities exhibited by children with RDSP.
Porges et al. (1996) discuss variations in psychophysiology that allow us to understand differential responses that we see clinically among children with RDSP. One example is an inefficient physiological response such as higher cry thresholds and differences in heart-rate variability. Possible sympathetic dominance lowering the infant's threshold for arousal is also implicated (Lester and Boukydis 1990).
In a four-year follow-up of infants with RDSP, higher baseline cardiac vagal tone was associated with poorer developmental, sensory motor and/or emotional and behavioral difficulties, suggesting some relationship between the vagal tone and persistence of RDSP over time (DeGangi et al. 1993).
Parents often ask if their child will always have this disorder and how their child will look and act as they get older. At present, there are no research studies that describe the long-term stability of RDSP over time. However, clinical experience indicates that, from ages two to five, RDSP continues to be an appropriate diagnosis. Many of the early symptoms and behavioral responses continue to be demonstrated by the children until about age eight, when they decrease and social skills increase. However, some children at this age have responses that look like Attention Deficit Hyperactivity Disorder (ADHD) behaviors and need help with emotional, attention and impulse control, as well as assistance with social skills. Other children appear similar to children with Asperger's Syndrome but are more able to have intense social behaviors than children with that diagnosis. Children with an under-reactive type of RDSP are often misdiagnosed with the diagnosis of Autism Spectrum Disorder (ASD).
One important clinical question is whether RDSP are a harbinger to later difficulties in a child's life. If so, what could be done to prevent the progression of symptoms?
In a prospective descriptive investigation, DeGangi et al. (1993) found that infants with baseline higher scores on cardiac vagal tone persisted with behavioral difficulties and poorer developmental outcome. Then DeGangi and her colleagues considered how the infants with RDSP fared when treatment was offered.
Thirty-nine infants were diagnosed with RDSP through interdisciplinary assessment. These infants were followed and reassessed at three years of age. Of the 39 subjects, 26 chose treatment, and the remaining 13 constituted the untreated group of infants with RDSP. Eleven infants without the diagnosis of RDSP constituted the control group. The finding that infants with RDSP showed more problems than normal control infants regarding sensory integration, regulation, attention, motor, sleep and behavioral difficulties was not surprising. However, the findings that the self-selected treated infant group given 12 weeks of intensive child-centered intervention (sensory integration therapy, parent guidance and parent-child play) did well on emotional and behavioral indicators, in spite of having more sensory and constitutional problems than untreated infants with RDSP, has clinical significance. The finding that treated infants showed more feeding problems and parental depression between 7 and 30 months, compared to the untreated group, could not be explained satisfactorily. At three years, untreated children with RDSP showed more emotional and behavioral problems, and treated children with RDSP had more motor and sensory integrative problems (DeGangi et al. 1996).
There are, however, problems with researchers using varying diagnostic criteria in the stability research. Becker et al. (2004) found that family adversity seemed more important than multiple regulation difficulties for predicting later hyperkinetic symptoms. These researchers, however, did not use the criteria for RDSP as specified by the DC: 0-3 diagnostic system.
DeGangi et al. (2000) carried out another prospective study with two age- matched groups of children aged 7 to 30 months, with RDSP, based on severity of RDSP symptoms. They included ten infants with mild RDSP symptoms, 22 infants with moderate/severe RDSP symptoms, 38 age-matched control infants, and a fourth group of 19 infants diagnosed with Pervasive Developmental Disorder (PDD). At 36 months, 60 percent of the children with mild RDSP identified at 7 and 30 months of age did not meet any criteria for RDSP. (Diagnosis of what was originally called Regulation Disorder was not made using DC: 0-3 criteria since the system was not available at the time of the initial study.) However, 95 percent of infants with moderate RDSP could be identified in two clusters that demonstrated deficits - a motor-language-cognitive development cluster and a parent-child relational cluster. A most interesting observation is that infants initially diagnosed with PDD were given a DSM-IV diagnosis at age 36 months of PDD and cognitive delay. This study also found that children with PDD shared attributes of children with RDSP.
In our follow-up at the British Columbia's Children's Hospital (BCCH) Infant Psychiatry Clinic, there were two points of note. We found that the outcome of RDSP symptoms depended on when we assessed the progression. The majority of children were preschoolers at the time of first diagnosis. At six-months follow- up,a majority of the children no longer demonstrated any symptoms (quit symptoms), but at one-year follow-up there were more problems resembling ASD than ADHD and after two years of follow-up, the majority were either diagnosed as having ADHD or were treated for symptoms of ADHD. Some of the children, at the end of a three-year follow-up, were split into either having a confirmed diagnosis of ADHD or ASD. These clinical observations were for cases seen from 1999 to 2003. They have prompted us to look at our data in a methodical fashion and the analysis of our sample is ongoing. We are moving closer to an answer to the hypothesis regarding whether or not RDSP in which sensory integration difficulties are more prominent seem to be a harbinger to the diagnoses of ADHD or ASD. The exact significance of this phenomenon can only be reported when the analysis of the data is completed.
Prevalence and gender differences in children with Regulation Disorders
There are a greater number of boys than girls with this disorder. In a series of parent groups for parents of children with RDSP, held at BCCH (a tertiary regional paediatric hospital), with the average of six parents per group, only two families with girls were referred.
A chart review completed at BCCH for a period of five years revealed seven girls and 33 boys - a ratio of 4.7 boys to one girl. The children all had reported regulation difficulties, diagnosable by the DC: 0-3 (1994) definition in use at the time.
Similar findings are also reported by Israeli researchers. Tirosh et al. (2003) indicated different prevalence depending on the age of the children. Among a younger group (age 6 to 17 months), the statistically significant prevalence among boys was 23.5 percent and girls 13.1 percent. Among the older age group (18 to 36 months) there was a trend with 21.1 percent prevalence among boys and 14.8 percent among the girls.
There is little research on gender differences in behaviors and responses in children with RDSP. Parent observations indicate that girls do not act out with aggressive behaviors as much as boys but often demonstrate high impulsivity that may result in danger to themselves. Girls appear to have more difficulty shifting mental set (thinking about new information or mentally moving back and forth between information content) and with transitions. They may not be aggressive to others but often are towards themselves. Boys may have more behavioral and attention problems. They may be more inept in motor areas and more physically aggressive. Boys may have more expressive language problems with mumbling and stammering. However, once the boys can communicate more clearly, the aggressive behaviors that they demonstrate often decrease.
Regulation Disorders and ADHD
As with any child with an additional diagnosis, the child who has both RDSP and ADHD is a more complex child than the child who has only one of these disorders. Not all children with RDSP will have ADHD or vice versa. A subgroup can be defined but they can all be described under the Disruptive Behavior Disorder Not Otherwise Specified (NOS) diagnostic grouping. The usual presentation of ADHD involves problems with attention, impulsivity and hyperactivity. The child with ADHD and RDSP may have more problems because of the aspects of disregulation, temperamental problems, sensory, motor and spatial problems that interact and often compound the problems created by ADHD.
Regulation Disorders and autism
Some children with RDSP mistakenly receive a diagnosis on the autism spectrum. It is easy to see why that would occur. Children who are slow to respond to sensory input often look withdrawn, listless, and only interested in themselves. Infants with a fearful, cautious presentation of RDSP (Type A, Regulation Disorder DC: 0-3R 2005) may show an increased sensitivity to loud noise, or may have tactile defensiveness. DC: 0-3R (2005) describes how these children attempt to escape from a stimulus and sometimes become motorically agitated. Children with an under- responsive pattern, slow motor patterns of limited exploration or restricted play repertoire also demonstrate responses similar to children on the autism spectrum. In addition, children diagnosed with Multisystem Developmental Disorders (MSDD), using the DC: 0-3R system, also show striking similarities to RDSP and ASD. There are very few studies that have looked at these diagnostic dilemmas. In a BCCH clinic study, we found that it was indeed difficult to be accurate about the diagnosis of ASD in young children (Reebye et al. 2000). Another study that looked at distinguishing diagnostic boundaries between RDSP and MSDD found that children with RDSP and children with MSDD showed qualitative and quantitative differences in linguistic, behavioral and relational dimensions (Cesari et al. 2003).
Greenspan and Weider (1998) reviewed clinical records of 200 children that met the diagnosis of autism or Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) (DSM-IV-TR, APA 2000). The charts of each child were followed for at least two years. Children in this study, even with the diagnosis of autism or PDD-NOS, had responses similar to those who are diagnosed with RDSP, with 28 percent demonstrating self-absorption, 19 percent demonstrating hypersensitivity to touch or sound, and 48 percent of the sample having severe motor planning dysfunction.
We have referred elsewhere to our own experience of evolution of diagnostic change in children diagnosed with RDSP (refer to BCCH experience, Reebye 1996; Reebye et al. 2000; Reebye and Stalker 2003).
Regulation Disorders and Neonatal Abstinence Disorder
Clinical and scientific information related to the effects on infants born to mothers who abused alcohol during their pregnancy is abundant. Researchers stress evidence of difficulty modulating incoming stimuli and general problem-solving difficulties with children who have prenatal exposure to alcohol (Streissguth and LaDue 1987).
In children exposed to cocaine, neurobehavioral organizational deficits were observed in preclinical (using rat pups) studies (Hume et al. 1989) and clinical studies of human fetuses. Disorganized behavioral state in the fetus successfully predicted abnormal newborn behavior. Their findings support the concepts that cocaine exposure disrupts central nervous system development and that fetal assessment of state is predictive of neonatal outcome (Simonik, Robinson and Smotherman 1993). As there are overlapping constructs of motor and sensory disorganization, one must be aware of these developments, but as yet there is no definite way to make a primary diagnosis of RDSP in children exposed in utero to toxic drug substances. Clinical experience tells us that language processing differentiates these children from children with a RDSP diagnosis without any known organic cause. At the time of writing this book, we did not have any empirical findings to support or discard this overlapping symptom presentation.
Regulation Disorders and sleep disorders
DC: 0-3R (2005) describes sleep behavior disorders in a separate category. This category is reserved for two types of sleep disturbances that occur after the age of 12 months.
In the original 0-3 Diagnostic Classification (ZERO TO THREE 1994) there was an emphasis on sleep, eating and elimination patterns within the description of Regulation Disorders. Sleep regulation is one of the major neuroadaptive tasks of early infancy and therefore continues to be relevant to our discussion. However, having sleep disturbance in isolation cannot be included as a criteria for the diagnosis of RDSP.
The available evidence, direction of the DC: 0-3R task force, and clinical experience indicates that sleep disturbance is a common symptom (complaint) but not a necessary condition for the diagnosis of RDSP.
Illustrated by Bob Spencer