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Prevalence and Functions of Self-Injurious Behavior in the Prader-Willi Syndrome

Permanent Link: http://ufdc.ufl.edu/UFE0021328/00001

Material Information

Title: Prevalence and Functions of Self-Injurious Behavior in the Prader-Willi Syndrome
Physical Description: 1 online resource (62 p.)
Language: english
Creator: Neidert, Pamela Lynn
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2007

Subjects

Subjects / Keywords: analysis, functional, pws, sib
Psychology -- Dissertations, Academic -- UF
Genre: Psychology thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: Individuals with Prader-Willi syndrome, a genetic disorder characterized by mental retardation, excessive overeating, and extreme obesity, commonly engage in numerous forms of self-injurious behavior (SIB). In the current study, we attempted to identify the prevalence and functions of SIB in the Prader-Willi syndrome. In Study 1, we administered a questionnaire to the care provider/residential living agencies registered with the National Prader-Willi Association of the USA. The questionnaire was designed to identify the prevalence of SIB in individuals with Prader-Willi syndrome, as well as the topography, frequency, and severity of SIB. Study 1 showed a relatively high prevalence of SIB in PWS (58%). Skin picking was the most commonly reported topography. In Study 2, we conducted functional analyses with a subset of individuals from Study 1 to identify the most common variables responsible for the maintenance of SIB. Results showed the majority of SIB was maintained by automatic reinforcement and, to a lesser extent, social positive reinforcement. Results are discussed in terms of implications for treatment development.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Statement of Responsibility: by Pamela Lynn Neidert.
Thesis: Thesis (Ph.D.)--University of Florida, 2007.
Local: Adviser: Iwata, Brian.

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2007
System ID: UFE0021328:00001

Permanent Link: http://ufdc.ufl.edu/UFE0021328/00001

Material Information

Title: Prevalence and Functions of Self-Injurious Behavior in the Prader-Willi Syndrome
Physical Description: 1 online resource (62 p.)
Language: english
Creator: Neidert, Pamela Lynn
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2007

Subjects

Subjects / Keywords: analysis, functional, pws, sib
Psychology -- Dissertations, Academic -- UF
Genre: Psychology thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: Individuals with Prader-Willi syndrome, a genetic disorder characterized by mental retardation, excessive overeating, and extreme obesity, commonly engage in numerous forms of self-injurious behavior (SIB). In the current study, we attempted to identify the prevalence and functions of SIB in the Prader-Willi syndrome. In Study 1, we administered a questionnaire to the care provider/residential living agencies registered with the National Prader-Willi Association of the USA. The questionnaire was designed to identify the prevalence of SIB in individuals with Prader-Willi syndrome, as well as the topography, frequency, and severity of SIB. Study 1 showed a relatively high prevalence of SIB in PWS (58%). Skin picking was the most commonly reported topography. In Study 2, we conducted functional analyses with a subset of individuals from Study 1 to identify the most common variables responsible for the maintenance of SIB. Results showed the majority of SIB was maintained by automatic reinforcement and, to a lesser extent, social positive reinforcement. Results are discussed in terms of implications for treatment development.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Statement of Responsibility: by Pamela Lynn Neidert.
Thesis: Thesis (Ph.D.)--University of Florida, 2007.
Local: Adviser: Iwata, Brian.

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2007
System ID: UFE0021328:00001


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PREVALENCE AND FUNCTIONS OF SELF-INJURIOUS BEHAVIOR
IN THE PRADER-WILLI SYNDROME




















By

PAMELA L. NEIDERT


A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY

UNIVERSITY OF FLORIDA

2007






































S2007 Pamela L. Neidert









ACKNOWLEDGMENTS

I would like to express my gratitude to those who helped me make this dissertation

possible. I thank my family and friends for their continued encouragement and support. I thank

the undergraduate and graduate students for their valuable input and help in conducting these

studies, especially Claudia Dozier, Jessica Thomason, and Erin Camp. I would also like to

acknowledge the support and assistance of those who served on my committee: Drs. Jesse

Dallery, Jennifer Elder, Scott Miller, and Timothy Vollmer. Special thanks go to Dr. Brian Iwata

for his invaluable support and guidance throughout my graduate career.












TABLE OF CONTENTS


page

A CKNOWLED GMENT S ................. ................. 3.............


LI ST OF TABLES ................. ................. 5......... ...


LIST OF FIGURES ................. ..............6........... .....


CHAPTER


1 INTRODUCTION ................. ..............8........... .....


2 STUDY 1: PREVALENCE OF SELF-INJURIOUS BEHAVIOR IN THE PRADER-
WILLI SY NDROME ................ ................. 14..............


M ethod ................. ................. 14.............

Subjects ............. ... .. .......... .. ............... 14....
Survey Instrument and Procedure ................ ................. 14.............
Results and Discussion.............. ............... 16


3 STUDY 2: PREVALENCE OF FUNCTIONS OF SELF-INJURIOUS BEHAVIOR IN
T HE PRADER-WILLI SY ND ROME ..........._.._........_........__ ............2


M ethod ..........._..._ ........._._ ..............._ 23...

Subjects and Settings. ..........._..._ ..............._ 23......._....
Self-Injury Trauma (SIT) Scale ..........._..._ ......._ ......._ ...........2
Response Measurement and Reliability ........_........_...__ ........__ ...........2
Procedures ..........._..._ ..............._ 25...._.._.....
Results and Discussion ..........._..._ ..............._ 28......._....


4 GENERAL DI SCUS SI ON..........._..._ ..............40....._.._ ...


APPENDIX


A NATIONAL SURVEY ON SELF-INJURIOUS BEHAVIOR IN THE PRADER-
WILLI SY NDROME ................ ..............50. ...............


B THE SELF-INJURY TRAUMA (SIT) SCALE ................ ..............53. .............


LI ST OF REFERENCES ................. ................. 54......... ...


BIOGRAPHICAL SKETCH ................ ..............62. ...............










LIST OF TABLES


Table page

2-1 Demographic characteristics of subject sample ............................. ................. ..... 19

2-2 Frequency and percent of SIB topography, frequency, severity, and medical care..........20

2-3 Comparisons of SIB prevalence findings by topography.................... ............... ..........21

2-4 Frequency and percent of reported treatment for SIB.................... ............................21

3-1 Subject characteristics ................... .......... ....................32....

3-2 Distribution of SIB functions in current PWS population compared to DD population...33

4-1 Large-N studies showing SIB prevalence estimates ................... .............................49

4-2 Smaller-N studies showing SIB prevalence estimates ................... ............ ..............49










LIST OF FIGURES


Figure page

2-1 Frequency plots of skin picking frequency, injury severity, and medical care
require ents ................... .......... ....................22.....

3-1 Frequency of SIB during first alone session conducted in three different session
rooms (top panel). Cumulative frequency of SIB during consecutive 10-s intervals
of alone session in each of the rooms (bottom panel). ................... ............ ..............34

3-2 Percentage of intervals (subjects JC and PP) and responses per minute (subjects AB
and TH) across sessions and experimental conditions for cases of SIB maintained by
social positive reinforcement. ................... .................... 35...... ......

3-3 Responses per minute (subjects DP, BR and PM) and percentage of intervals of SIB
(subjects, CM, DH, and AC) across sessions and experimental conditions for cases of
automatic reinforcement. ................... ....................36..............

3-4 Responses per minute (subjects KB and MJG) and percentage of intervals of SIB
(subjects EM, KBL, KD, KT, and KM) across sessions and experimental conditions
for cases of SIB maintained by automatic reinforcement. ................... ............... .........37

3-5 Responses per minute (subjects AR and JL) and percentage of intervals of SIB
(subjects JB, GB, JS, and JG) across sessions and experimental conditions for cases
of SIB maintained by automatic reinforcement. ......... .................. .................. ...38

3-6 Responses per minute (subjects LT) and percentage of intervals of SIB (subject LN)
across sessions and experimental conditions cases of SIB in which source of
reinforcement was not identified. ..................................... ................3









Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy

PREVALENCE AND FUNCTIONS OF SELF-INJURIOUS BEHAVIOR
IN THE PRADER WILL SYNDROME

By

Pamela L. Neidert

August 2007

Chair: Brian A. Iwata
Major: Psychology

Individuals with Prader-Willi syndrome, a genetic disorder characterized by mental

retardation, excessive overeating, and extreme obesity, commonly engage in numerous forms of

self-injurious behavior (SIB). In the current study, we attempted to identify the prevalence and

functions of SIB in the Prader-Willi syndrome. In Study 1, we administered a questionnaire to

the care provider/residential living agencies registered with the National Prader-Willi

Association of the USA. The questionnaire w'as designed to identify the prevalence of SIB in

individuals with Prader-Willi syndrome, as well as the topography, frequency, and severity of

SIB. Study 1 show ed a relatively high prevalence of SIB in PWS (58%). Skin picking was the

most commonly reported topography. In Study 2, we conducted functional analyses with a

subset of individuals from Study 1 to identify the most common variables responsible for the

maintenance of SIB. Results show ed the majority of SIB was maintained by automatic

reinforcement and, to a lesser extent, social positive reinforcement. Results are discussed in

terms of implications for treatment development.









CHAPTER 1
INTRODUCTION


Self-injurious behavior (SIB) is defined as any behavior that produces injury to an

individual's own body (Tate & Baroff, 1966). Commonly observed topographies include head-

banging, self-biting, and self-scratching (Rojahn, 1994). The estimated prevalence of SIB is

reported to be between 5% to 23% among individuals with developmental disabilities (DD)

(Griffin, Williams, Stark, Altmeyer, & Mason, 1986; Jacobson, 1982; Maurice & Trudel, 1982)

but can vary widely in different subgoups. For example, SIB has been found to occur almost

universally with individuals with Lesch-Nyhan syndrome but has been found to occur

infrequently in other disabilities such as Down syndrome except in cases of severe to profound

mental retardation. (Thompson & Caruso, 2002).

Thompson and Caruso (2002) suggested several distinguishing characteristics of SIB in the

DD population (particularly among individuals with moderate to severe intellectual disabilities)

that can be considered distinct from SIB observed in individuals with psychiatric disorders (e.g.,

self-mutilation). First, the behavior typically involves repetitive movements of body parts (e.g.,

limbs, head, trunk, etc.) that produce physical damage. Second, the behavior is episodic (i.e.,

occurs in discrete bouts) and occurs many times per day.

There are significant health risks associated with SIB. Commonly observed physical

injuries include tissue lacerations and contusions, permanent scarring and callus formation, and

retinal detachment (Hyman, Fisher, Mercugliano, & Cataldo, 1990). In addition to the injury

that it may cause, SIB often interferes with academic, self-care, or vocational instruction and

may limit an individual to restrictive living placements (Rojahn & Esbensen, 2002). Further,

Favell, McGimsey, and Schell (1982) suggested that physical and chemical restraints often










required for protection may not only prevent engagement in therapeutic learning activities, but

may themselves result in physical damage (e.g., muscle atrophy, medication side effects, etc.).

Although drugs and chemical and physical restraint have been used in attempt to eliminate

SIB, the greatest success has been found using methods based on operant conditioning (Iwata,

1994), although the specific forms of intervention have changed over the years. Johnson and

Baumeister (1978) reviewed studies published from 1965 to 1976 and found electric shock to be

the most commonly reported treatment for SIB, followed by differential reinforcement. Gordan-

Smith and Matson (1985) reviewed studies published from 1976 to 1983 and found that

overcorrection had replaced shock as the most common treatment for SIB. Kahng, Iwata, and

Lewin (2002) reviewed studies published from 1964 to 1999 and found that studies on

reinforcement and punishment were published at roughly equal rates throughout the 1970s and

1980s; however, a sharp increasing trend in the use of reinforcement-based studies was observed

since the early 1990s, while a gradual decreasing trend in punishment-based studies was

observed. The increase in reinforcement-based research has been, at least in part, influenced by

the development of procedures designed to identify the causes of SIB rather than merely the

evaluation of procedures to reduce the behavior (Pelios, Morren, Tesch, & Axelrod, 1999). In

fact, Kahng et al. (2002) noted a high degree of correspondence between the use of functional

analysis assessment procedures and the selection of reinforcement-based interventions in their

review.

In a conceptual review of research on SIB, Carr (1977) suggested several potential

determinants of SIB including the social positive reinforcement hypothesis (SIB functions to

produce assess to environmental events via a social agent), the social negative reinforcement

hypothesis (SIB functions to terminate or avoid an aversive environmental stimulus), the self-










stimulation hypothesis (SIB functions to produce tactile, vestibular, or kinesthetic stimulation),

and the organic hypothesis (SIB is a product of aberrant physiological processes of a genetic

origin, as in Lesch-Nyhan syndrome, or of nongenetic origin, as in elevated pain thresholds or

medical conditions). A number of empirical studies demonstrated relations between a specific

environmental event and SIB (Lovaas & Simmons, 1969; Carr, Newsom, & Binkoff, 1976;

Weeks & Gaylord-Ross, 1981). However, Iwata, Dorsey, Slifer, Bauman, and Richman

(1982/1994) described the first comprehensive functional analysis model to assess multiple

sources of reinforcement for SIB. Nine participants were observed during brief, repeated

exposure to a series of 4 conditions consisting of the delivery of attention contingent on SIB (test

for social positive reinforcement), the removal of task demands contingent on SIB (test for social

negative reinforcement), a relatively barren environment in which no consequences were

delivered following SIB (test for automatic reinforcement), and a control condition in which no

tasks were presented and access to leisure materials and attention was available on a

noncontingent basis. Six of the 9 participants exhibited higher rates of SIB in one of the test

conditions, indicating that SIB can be maintained by different sources of reinforcement.

Functional analysis methodology has become the assessment tool of choice in applied

behavior analysis because it identifies environmental events that influence problem behavior and

provides an empirical basis for developing treatments that alter the contingencies directly

responsible for maintaining problem behavior. Over the past 20 years, functional analysis

methodology has been successfully extended from its initial focus on SIB to other populations

and forms of problem behavior (Derby et al., 1987; Mace & Knight, 1986; Northup et al., 1995;

Northup, Cigrand, & Asmus, 1992; O'Reilly, 1995). The result has been the widespread

adoption of functional analysis methodologies by both researchers and clinicians. The 1989










National Institute of Health (NIH) consensus panel on the treatment of destructive behaviors in

the DD population recommended that treatment of severe behavior disorders be based on the

results of functional analyses (NIH, 1989). Similarly, the 1997 reauthorization of the Individuals

with Disabilities Education Act contained a mandate requiring the use of a functional behavior

assessment prior to a change in placement for a student with a behavior disorder.

Although functional analysis research typically focuses on assessment and treatment of

problem behavior at the level of the individual, the methodology might also serve as a means for

conducting epidemiological studies of behavioral function. That is, accumulation of

experimental data over time with a large number of subjects would be helpful in establishing a

data base on the functional characteristics of SIB that would be difficult to establish over the

short intervals of time typically used in studies of incidence or prevalence (Iwata et al., 1994).

Several large-scale studies have been conducted to identify the most common functions for SIB

in the DD population. Iwata et al. (1994) summarized data from 152 functional analyses drawn

from the same sample and noted that social negative reinforcement was the most common

function of SIB. In a subsequent meta-analysis of the treatment literature on SIB, Kahng et al.

(2002) examined 265 data sets from 396 studies. That is, only experimental data sets were

included in the meta-analysis; studies that included indirect or descriptive functional assessments

were excluded. The analysis also indicated that social negative reinforcement was the most

common. In a more general review of the literature on functional analysis, Hanley, Iwata, and

McCord (2003) summarized 536 data sets and found similar percentages for both social positive

reinforcement and social negative reinforcement. Finally, Kurtz et al. (2003) summarized 30

data sets, in which the analyses focused specifically on young children under the age of four, and

found social positive reinforcement as the most common function.










As previously mentioned, the appearance of SIB has been correlated with several genetic

syndromes such as Lesch-Nyhan syndrome (reported prevalence is 100%; Anderson & Ernst,

1994), Prader-Willi syndrome (reported prevalence is 60-80%; Symons, Butler, Sanders, Feurer

& Thompson, 1999), Smith-Magenis syndrome (reported prevalence is 50% to 70%; Smith,

Dykens, & Greenberg, 1998), and Rett syndrome (reported prevalence is 30% to 40%; Sansom,

Krishnan, & Corbett, 1993). The focus of this study is on SIB in the Prader-Willi syndrome.

Prader-Willi syndrome (PWS) is a genetic disorder involving chromosome 15 (Prader,

Labhart, & Willi, 1956). PWS is reported to occur in approximately 1 in 20,000 births, though

this may be an underestimate because many individuals with PWS are believed to be

undiagnosed (Whittington et al., 2001). Most individuals with PWS function in the mild range

of intellectual disability (Dykens & Shah, 2003). There are a number of common behavioral

characteristics of the syndrome, the most striking of which is hyperphagia (excessive eating).

Individuals with PWS often display food-related problem behaviors that include overeating, food

stealing, and pica. They are also reported to engage in ritualistic, repetitive, and other problem

behaviors including aggression, tantrums, and property destruction, and SIB.

Skin picking has been reported to be the most common topography of SIB in the PWS

population, with an estimated prevalence ranging from 65% to 97% (Dykens & Shah, 2003).

Wigren and Heimann (2001) noted that skin picking in PWS typically occurs before age 11 and

that the behavior tends to remain stable over time, though there seems to be some variability in

terms of both incidence and frequency. A number of authors have suggested that the occurrence

of skin picking seems to be independent of both gender and level of intellectual functioning

(Dykens & Cassidy, 1995; Stein et al., 1994; Wigren & Heimann, 2001). PWS practitioners

commonly refer to such picking as an "obsessive-compulsive" behavior inherent to the syndrome










(Dykens & Shah, 2003). This conceptualization seems to imply that the behavior is reflexive or

biological in nature and raises questions about the behavior' s sensitivity to environmental

variables. Additionally, it is unclear whether individuals with PWS also engage in SIB

topographies commonly reported in the DD population as a whole, such as head banging, self-

biting, etc.

Given both the reported high prevalence of SIB (most notably skin picking) in PWS and

the success of functional analysis methodology as a tool for identifying determinants of SIB, the

purpose of this study was two-fold. The purpose of Study 1 was to identify the prevalence of

SIB in individuals with PWS, as well as the topography, frequency, and severity of SIB. The

purpose of Study 2 was to identify functional characteristics of SIB with a subset of these

individuals.









CHAPTER 2
STUDY 1: PREVALENCE OF SELF-INJURIOUS BEHAVIOR IN THE PRADER-WILLI
SYNDROME

Method

Subjects

In an attempt to identify a national sample of individuals with PWS, we contacted the care-

provider agencies registered with the Prader-Willi Syndrome Association of the USA (PWSA

USA). PWSA USA was organized in 1975 as a resource for education and information about

PWS to parents, professionals, and other interested parties. Fifty agencies were identified from

the provider database maintained by the PWSA USA website. The coordinators/admini strators

of these agencies were asked to complete and return a survey for each individual with PWS that

they served.

Surveys were received from 28 of the 50 service providers yielding a subject sample of

203. The average subject age was 32 years (range, 11 years to 58 years). Demographic

characteristics of the sample (i.e., gender, level of functioning, presence of sensory impairments,

and genetic subtype of PWS) are shown in Table 2-1. The sample consisted of 89 males and 112

females (the gender of 2 individuals was not reported). The majority (83%) of individuals were

classified as having mild-moderate mental retardation. The genetic subtype of PWS was

identified in only 50% of cases. Over half of the individuals exhibited problem behaviors other

than SIB, with the exception of stereotypy, which was reported in 23% of the population. Of the

203 subjects surveyed, 117 (58%) were reported to engage in SIB.

Survey Instrument and Procedure

A Survey on Self-Injurious Behavior (SIB) in the Prader-Willi Syndrome (PWS) was

developed for the purposes of the current study. Surveys were sent via post and electronic mail

to the coordinators/administrators of each agency registered with PWSA USA, who were asked










to complete and return a survey for each individual with PWS whom they served. A letter

detailing the purpose of the survey and general instructions for survey completion accompanied

the survey.

The survey was a 3-part questionnaire. Part 1 requested basic information about the

individual (gender, age, level of functioning, presence of sensory impairments, genetic subtype

of PWS, and presence of maladaptive behaviors). Respondents were instructed to complete the

final two sections of the survey only for subjects who had displayed SIB within 6 months of the

time of survey completion. Part 2 requested a specific description of the topographies of SIB

exhibited by the individual. Respondents indicated which, if any, self-injurious topographies had

been observed, and then used a numeric scale to describe the frequency of each topography of

SIB (1-5, 1 = hourly, 5 = less than monthly). A list of topographies of SIB was developed from a

review of responses reported by several studies of SIB in the DD population (Barron &

Sandman, 1984; Griffin et al., 1986; Iwata et al., 1994; Rojahn & Esbensen, 2002). The list

consisted of 22 topographies, as well as the option to report other forms of SIB not included.

Because the risk associated with SIB has been reported to vary widely (Hyman et al., 1990;

Wigren & Heimann, 2001), Part 2 of the survey requested that respondents use a numeric scale

to describe both the level of physical injury (1-3, 1 = SIB produced loss of sensory or motor

function, 3 = SIB produced no permanent damage) and the medical care requirements (1-3, 1 =

SIB required hospitalization or surgery, 3 = SIB did not require care of medical professional)

associated with the topographies of SIB a subject was reported to exhibit. Finally, Part 3

requested information about current treatment, if any, for SIB in terms of prescribed medication

for SIB, use of physical restraints or protective equipment, medical treatment (e.g., wound care










by nurse) for SIB, and formal behavior management programs specifically designed to reduce

SIB. A copy of the survey is provided in Appendix A.

Results and Discussion

Self-injurious behavior was reported to occur in 117 of the 203 subjects surveyed,

indicating an SIB prevalence of 58% in this sample of individuals with PWS. The average age

of subjects exhibiting SIB was 29 years (ranging from 11 years to 56 years).

Table 2-2 shows the results of the prevalence findings for topography, frequency, injury

severity, and medical care requirements. The most common topography of SIB was skin picking,

reported to occur in 75% of the sample. The average frequency level of skin picking was 3

(occurs at least once a week but not daily), the modal severity level was 3 (has produced no

permanent damage), and the modal medical care level was 3 (has not required any care by a

medical professional). Other topographies of SIB were reported to occur much less frequently.

Of the 22 possible self-injurious behavior topographies on the survey, over half were reported to

occur in less than 10% of the sample.

These findings are unusual in several respects. The overall distribution of SIB

topographies reported in this PWS sample is very different than that reported in the DD

population as a whole. Table 2-3 shows the prevalence for several SIB topographies in the

current study with individuals with PWS as compared to the prevalence findings of several other

studies with individuals with DD.

A much higher prevalence of skin picking, orifice digging, and rumination was observed in

the PWS relative to the DD population, which averaged 25, 10%, and 10%, respectively. On

the other hand, the prevalence of head hitting, biting, and head banging was reported to be much

higher in the DD population, which averaged 45%, 39%, and 20%, respectively. However, all of










these topographies were reported in 17% or less of this PWS population. Nevertheless, the data

indicate that individuals with PWS engage in a wide range of SIB in addition to the commonly

reported skin picking topography.

Although skin picking was associated with the highest prevalence, it was not reported to be

frequent or severe for the most part. That is, skin picking in this sample occurred infrequently

and was not severe in terms of injury or medical care requirements. However, there were reports

of more frequent, severe skin picking. Figure 2-1 depicts frequency plots of the survey results

for skin picking in terms of frequency (top panel), injury severity (middle panel), and medical

care requirements (bottom panel).

Finally, results of Part 3 of the survey indicated that the most common treatment for SIB in

PWS was some type of formal behavior intervention program. Table 2-4 lists the frequency of

reported treatments for SIB. These findings are consistent with previous reports that treatment of

SIB in the DD population typically involves operant conditioning (Iwata et al., 1994), although it

is noted that very few respondents reported details regarding behavior program components or

relative effectiveness.

Study 1 identified a relatively high prevalence of SIB in PWS (58%). Additionally, results

indicated that individuals with PWS engage in a number of topographies of SIB (most notably

skin picking). However, the determinants of SIB in this population remain unclear because

attempts to identify the functional characteristics in SIB are essentially nonexistent. Wigren and

Heimann (2001) included in their survey questions soliciting parental opinion about situations in

which SIB was typically displayed. However, no experimental analysis of variables that might

influence SIB has been reported in the PWS literature. Therefore, the purpose of Study 2 was to










conduct functional analyses with a subset of individuals from Study 1 to identify environmental

determinants of SIB in individuals with PWS.










Table 2-1. Demographic characteristics of subject sample
Number of Percent of
Characteristic subj ects sample
Gender Male 89 44%

Female 112 55%

Level of functioning Mild/moderate MR 168 83%
Severe MR 7 3%

Profound MR 1 1%

Unknown 27 13%

Sensory impairments Hearing deficit 6 3%
Vision deficit 57 28%

Type of PWS Paternal Deletion 38 19%
UPD 21 10%

Imprinting defect 2 1%
PWS Like 15 7%

Translocation 2 1%

Unknown 101 50%

Maladaptive Behavior Hoarding 91 45%

Stealing 161 79%
Tantrums 159 78%

Aggressive behavior 112 55%
Disruptive behavior 108 53%

Noncompliance 122 60%

Stereotypy 47 23%
SIB 117 58%









Table 2-2. Frequency and percent of SIB topography, frequency, severity, and medical care
Frequency Severity Medical Care
Topography Number of subjects Percent (Average) (Mode) (Mode)
Skin picking 88 75% 3 3 3
Orifice digging 33 28% 3 3 3
Biting 20 17% 4 3 3
Hair pulling 18 15% 4 3 3

Body banging 16 14% 5 3 2
Body hitting 15 13% 4 3 2
Bruxism 15 13% 3 3 2
Rumination 15 13% 3 3 3

Head banging 14 12% 4 3 3

Polydipsia 10 11% 4 3 3
Pica 12 10% 4 3 3

Head hitting 11 9% 4 3 3
Nail pulling 10 9% 4 3 3

Aerophagia 7 6% 4 3 3
Cutting 7 6% 5 3 1
Choking 6 5% 5 3 3

Eye poking 6 5% 4 3 3
Neck whipping 6 5% 4 3 3
Teeth pulling 6 5% 5 3 2
Vomiting 6 5% 4 3 3
Hand mouthing 5 4% 5 3 3
Other 5 4% 4 3 3

Throat gouging 4 3% 5 3 3









Table 2-3. Comparisons of SIB prevalence findings by topography
Neidert Griffin Emberson Roj ahn
(Current) (1986) (1990) (1984)
Topography N= 117 N= 184 N= 163 N= 60
Skin
picking/scratching 75% 26% 16% 25%
Orifice digging 28% 10% Not reported <10%

Biting 17% 39% 37% 40%

Rumination 13% <10% Not reported <10%

Head banging 12% 29% <10% Not reported

Head hitting 9% 37% 29% 70%


Table 2-4. Frequency and percent of reported treatment for SIB

Treatment Number of subjects Percent
Medical intervention 35 30%

Physical restraint or protective equipment 15 13%
Medical care 40 34%

Formal behavior program 76 65%













5-Occurs less than 1/month


4-COccurs at least 1/month


3-Occurs at least 1/week


2-Occurs at least 1/day


1-Occurs hourly


0 10 20 30




3-No permanent damage




2- Pe~rmanent disfigurement




1-Loss of function



0 20 40 60 80




3- No medical care










1-H hospitalization/ surgery



0 20 40 60

FREQUENCY



Figure 2-1. Frequency plots of skin picking frequency, injury severity, and medical care
requirements












CHAPTER 3
STUDY 2: PREVALENCE OF FUNCTIONS OF SELF-INJURIOUS BEHAVIOR IN THE
PRADER-WILLI SYNDROME

Method

Subjects and Settings

Subjects were 25 individuals with PWS who lived and worked at a local adult program for

individuals with developmental disabilities. These subjects were reported by staff to have a

history of engaging in SIB. Additionally, all subjects' behavior intervention plans at the program

included SIB as a target problem behavior. Sessions were conducted at the day program in

therapy rooms containing tables, chairs, and session materials relevant to the specific assessment

conditions. Sessions lasted 10 min and were conducted three to five times per day, 4 to 5 days

per week.

Self-Injury Trauma (SIT) Scale

The Self-Injury Trauma (SIT) Scale is a rating scale for collecting data on surface tissue

damage caused by SIB (Iwata, Pace, Kissel, Nau, & Farber, 1990). The scale classifies and

quantifies tissue damage according to topography, location of the injury on the body, type of

injury, and number of injuries. A copy of the SIT Scale is provided in Appendix B. The SIT

Scale was conducted for two reasons. First, the information allowed identification of a given

individual's specific topographies of SIB. Second, the SIT Scale provided an overall risk

estimate such that appropriate safety precautions could be taken during the course of the

functional analysis. Prior to the start of a subject' s functional analysis, two behavior analysts

administered the SIT Scale. First, the topographic aspects of SIB were identified via record

review of the subject' s behavior intervention plan. In addition, physical evidence of healed

injuries (e.g., scars, permanent disfigurement, etc.) was documented. Second, current injuries










were observed and recorded. For each area of the body containing a current (unhealed) injury,

observers used a scale (1, 2, or 3) to record the number of wounds at that particular location.

Observers then noted the type and severity of the most severe wound at that location, identified

the wound as either an abrasion/laceration or a contusion, and used a numeric scale (1, 2, or 3) to

indicate wound severity. Finally, the information was summarized to provide an overall risk

estimate. For example, a high overall risk estimate, which consisted of an extensive abrasion or

deep laceration, a contusion resulting in tissue rupture, or extensive swelling on the head, would

likely require immediate medical attention and subsequent prevention of the behavior such that

safely allowing the behavior to occur during the functional analysis would be difficult. For

individuals with a high risk estimate, functional analysis sessions were conducted only during

times in which a nurse was available. Additionally, sessions were terminated (and the nurse was

notified) if the response produced visible injury (e.g., blood, redness, swelling). Conversely, a

low to moderate overall risk estimate would likely require medical attention as needed (e.g.,

administration of minor first aid procedures by either the behavior analyst or nursing staff

member following a block of sessions), but could be allowed to occur during the functional

analysis without resulting in more serious trauma.

The age, functioning level, targeted topographies of SIB, and overall risk estimate (as

determined by the SIT scale) for each subject is reported in Table 3-1.

Response Measurement and Reliability

Target behaviors were selected for subjects on an individual basis and are listed in Table 3-

1. Skin picking was defined as any nail-to-skin contact producing visual displacement of the

skin or touching existing wounds. Hair pulling was defined as using hands to forcibly pull or

remove hair from the head. Biting was defined as insertion of a body part in the mouth such that










the upper and lower teeth made contact with the skin at that location. Rectal digging was defined

as insertion of the subject' s hands inside their pants past the elbow. For all subjects, skin picking

was the most commonly observed topography; hair pulling, biting, and rectal digging were rarely

observed. Therefore, data are reported as a combined measure of SIB. Trained graduate and

undergraduate students collected data on the occurrence of SIB (as defined for each subject) on

handheld personal digital assistants (PDAs). Frequency data collection was used for subjects

whose SIB had a discrete onset and offset. Interval data collection was used for subjects whose

SIB occurred at extremely high rates or occurred for extended periods of time. Data were

converted to either number of responses per minute (rpm) or percentage of intervals occurrence

of SIB for purposes of data analysis.

Interobserver agreement was assessed during an average of 42% of sessions for all subjects

by having a second observer simultaneously but independently collect data with the primary

observer. Sessions were divided into 10-s intervals, and data were compared on an interval-by-

interval basis. Agreement coefficients were calculated by dividing the smaller number of

responses in each interval by the larger number of responses; these fractions were averaged

across intervals and multiplied by 100%. Mean agreement scores for SIB were above 90% for

all subjects.

Procedures

A functional analysis (Iwata et al., 1982/1994) was conduced for each subject to identify

the consequences that maintained SIB. Three test conditions (alone, attention, and demand) and

a control condition (against which levels of SIB in the test conditions were compared) alternated

in a multielement design. The conditions of the analysis were presented in a fixed sequence

(alone, attention, play, demand) to arrange a strong establishing operation for the reinforcer in a










given condition by preceding that condition with a condition in which the reinforcer was absent

(deprivation).

During the alone condition, the subject was alone in an otherwise barren room (i.e., no

materials were present). No programmed consequences were arranged for occurrences of SIB.

The purpose of the alone condition was to determine if SIB was maintained by automatic

reinforcement (i.e., the behavior persisted in the absence of social contingencies).

During the attention condition, the subject and a therapist were in a room. The therapist

asked the subject to play independently with materials, then ignored the subject except to deliver

attention (i.e., brief physical interruption of the response, verbal reprimand, and statement of

concern) following occurrences of SIB. The purpose of the attention condition was to determine

if SIB was maintained by social positive reinforcement (access to attention).

During the demand condition, a therapist presented academic (e.g., math problems,

reading comprehension questions, spelling tasks, etc.), vocational (e.g., assembly tasks, cleaning

tasks, etc.), or hygienic (e.g., brush hair, rub lotion on hands, etc.) tasks to the subject using a

three-step prompting sequence (verbal, gestural, physical prompts). Compliance with the task

resulted in verbal praise; SIB resulted in a 30-s break from the task. The purpose of the demand

condition was to determine if SIB was maintained by social negative reinforcement (escape from

demands) .

During the control (play) condition, a therapist and the subject were in a room. No task

demands were presented, and preferred toys and attention were continuously available. No

programmed consequences were arranged for SIB. The purpose of the play condition was to

serve as the control condition, against which the test conditions were compared.










Whenever possible, specific stimuli, including therapists, colored shirts, and session

rooms, were correlated with the different functional analysis conditions to facilitate

discrimination. Additionally, alone sessions were conducted in a room equipped with a hidden

camera. A hidden camera was used in favor of the more traditional one-way mirror because of

the pattern of behavior displayed by one of the first individuals for whom a functional analysis

was conducted (Subject PM). Figure 3-1 shows the results of this Subject PM' s functional

analysis. The top panel shows frequency of SIB during several alone sessions. The bottom

panel shows cumulative frequencies of SIB during those sessions. The first alone session

conducted with Subject PM was conducted in a room equipped with a one-way mirror (Room

Al). A total of 19 occurrences of SIB were observed during this session. However, the

cumulative graph shows that SIB occurred at a high rate during this session in Room Al until

approximately minute 2, at which point the behavior stopped occurring for the remainder of the

session. Subsequently, alone sessions were conducted in a different room, Room B, also

equipped with a one-way mirror. The same pattern of responding was observed. That is, a

relatively high frequency of SIB was observed; however, the within-session pattern of

responding shows that all behavior occurred within the first three minutes of session. To control

for the possibility that the subject had detected the presence of the observer behind the one-way

mirror, sessions were subsequently conducted in a room equipped with a camera hidden inside a

nonfunctional smoke detector. The top panel shows a moderate frequency of SIB during the first

session conducted in this room (Room C). Within-session data analysis showed that responding

continued to occur throughout this session and continued to occur during all subsequent alone

sessions conducted in this room. Finally, an additional session was conducted in the original

session room (Room A2) following completion of the functional analysis in which alone sessions










were always conducted in the hidden camera room. An immediate elimination of SIB was

observed that maintained throughout the session. Further, zero levels of SIB maintained during

four additional sessions (data not shown). Given these findings, the hidden camera room was

used as the setting for alone sessions conducted with all subsequent subjects.

Functional analyses were considered complete when differential responding was observed

after at least 3 complete sets of conditions or following the completion of 5 sets of conditions.

Higher levels of SIB in any of the test conditions relative to the control condition suggested the

reinforcer responsible for behavioral maintenance.

Results and Discussion

Three general patterns of responding for the current subjects were observed. First, four

subjects showed SIB maintained by social positive reinforcement. These subjects displayed

higher levels of SIB in the attention condition, in which SIB produced attention from another

person, relative to all other conditions. Figure 3-2 shows the results of the functional analyses

for these four subjects (JC, PP, AB, TH). Subject JC (top left panel), did not exhibit SIB in any

condition until session 10 (attention). Subsequently, JC exhibited consistently higher levels of

SIB in the attention condition as compared to the other conditions. A similar pattern of

responding was observed for subject PP (top right panel). Initially, a clear function was not

identified during the multielement functional analysis for subjects AB and TH (bottom left panel

and bottom right panel, respectively). Both subjects engaged in SIB to some extent in both the

attention and demand conditions; however, levels of SIB were not consistently higher in these

conditions across sessions, and SIB decreased to near-zero levels during the final sessions of the

multielement comparison. Subsequently, a pairwise comparison (Iwata, Duncan, Zarcone,

Lerman, & Shore, 1994) was used to clarify the function of SIB for these two participants. The










pairwise design consisted of several phases in which the independent variable was implemented

in a sequential (A-B-C) fashion, as in the reversal research design. However, each phase

consisted of both a test and a control, alternated in a multielement format. During the pairwise

comparison, subject AB and subject TH displayed consistently higher levels of SIB during the

attention condition relative to the control condition. Further, equally low levels of SIB were

observed in the demand and control conditions for both subjects, suggesting SIB was not

maintained by social negative reinforcement.

Six subjects engaged in SIB to some extent in more than one functional analysis condition.

However, levels of SIB were higher in the alone condition relative to the other conditions. This

pattern of responding suggests that SIB is maintained by automatic reinforcement (i.e., behavior

persists in the absence of social consequences). Figure 3-3 shows the results of the functional

analyses for these 6 subjects (DP, BR, CM, DH, AC, and PM). Subject DP (top left panel)

engaged in SIB across all conditions during the course of the analysis. Subject BR (top right

panel) initially engaged in higher levels of SIB during the alone, attention, and demand

conditions. However, SIB decreased to near-zero under both the attention and the demand

condition over the course of sessions, yet consistently high levels of SIB persisted in the alone

condition. Similar patterns of responding were observed for the other 4 subjects (CM, DH, AC,

and PM). That is, SIB occurred to some extent in more than one condition initially, but

decreased to near-zero levels over the course of the analysis in all conditions except the alone

condition.

Finally, 13 subjects engaged in SIB either exclusively or almost exclusively in the alone

condition, also suggesting SIB maintained by automatic reinforcement. Figures 3-4 and 3-5

show the results of the functional analyses for these 13 subjects (EM, KBL, KB, KD, KT, MJG,










KM, AR, JB, BG, JS, JL, and JG). Subjects EM and KBL (top left and top right panels of Figure

3-4, respectively) displayed variable levels of SIB. However, when SIB did occur, it was

observed almost exclusively (i.e., with the exception of a few instances in one other condition) in

the alone condition. The other subjects displayed high consistent levels of SIB in the alone

condition, for the most part to the exclusion of all other conditions.

Functional analysis results were unclear for two subjects behavior they did not engage in

SIB (LT) or exhibited it sporadically (LN) during the analysis. Figure 3-6 shows the results of

the functional analysis for these 2 subjects.

In Study 2, sources of reinforcement for SIB were identified in 92% of cases. That is, SIB

was not observed (or observed extremely infrequently) for only 2 of the 25 subjects in the study.

Self-injurious behavior was maintained by social positive reinforcement in 17% of cases in

which the reinforcer was identified, whereas SIB was maintained by automatic reinforcement in

the overwhelming majority of cases (83%). No cases in which SIB was maintained by social

negative reinforcement was observed. Table 3-2 summarizes the distribution of behavioral

functions for SIB for the 25 PWS subjects in the current study, as well as the distribution of

functions reported in four large-scale prevalence studies on SIB in the DD population. These

other studies covered the entire field of developmental disabilities. Although it is possible that

individuals with PWS were included in the studies, no information regarding individual subject

diagnoses was provided. The findings for the PWS population in the current study are

considerably different from the distribution of functions typically reported for SIB in the general

DD population.

The highest percentages reported in previous studies of SIB in the DD population were

associated with social reinforcement, and three of the studies reported high percentages for SIB










maintained by social negative reinforcement. Surprisingly, no cases of SIB maintained by social

negative reinforcement were identified in the current PWS population. Hanley et al. (2003) and

Kurtz et al. (2003) reported social positive reinforcement as the most common function for SIB

in the DD population. However, only a small percentage (17%) of the cases in the current study

were associated with attention-maintained SIB. Finally, all of the previous studies reported SIB

in the DD population to be maintained by automatic reinforcement in approximately 25% of

cases or less. However, the overwhelming majority of cases in the current study (83%) were

cases of automatically-mai ntained SIB.










Table 3-1. Subject characteristics


* MR = mental retardation


Subj ect
JG

KM

EM

JC

AC

BG

LT

JS

AB

KB

KT

LN

MJG

BR

KD

TH

KBL

DH

JL

DP

JB

PM

AR

CM


Age
11

14

14

16

18

18

18

20

21

21

21
22

24

24

25

26

26

29

29

32

33

37

38

42


Functioning Level
Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR

Mild/Moderate MR


Self-injury

skin picking, hair pulling

skin picking, biting, head banging

skin picking

skin picking, biting

skin picking, biting

skin picking

skin picking

skin picking

skin picking, head banging, biting

skin picking, biting

skin picking

skin picking

skin picking

skin picking, biting

skin picking

skin picking

skin picking, biting, rectal digging

skin picking

skin picking

skin picking

skin picking, biting

skin picking

skin picking

skin picking


Risk Estimate

low

low

low

low

high
low

low

low


low

low

low

low

moderate

low

low

low

low

low

high
low

low

low

low


56 Mild/Moderate MR


skin picking, hair pulling
g


low










Table 3-2. Distribution of SIB functions in current PWS population compared to DD population
Neidert Iwata et al. Kahng et al. Hanley et al. Kurtz et al.
Function (current) (1994) (2002) (2003) (2003)

Social positive
reinforcement 17% 26.3% 26.4% 39.2% 37.9%

Social negative
reinforcement 0% 38. 1% 31.3% 29.3% 3.4%

Automatic
reinforcement 83% 25.7% 27.5% 24.8% 13.8%


Unknown (No SIB) 8% 9.9% 7.9% 5.5% 37.9%




























Room A2


Room Al


Room B Room C
SES SION ROOM


30

20



10


10-S INTERVALS


Figure 3-1. Frequency of SIB during first alone session conducted in three different session
rooms (top panel). Cumulative frequency of SIB during consecutive 10-s intervals of
alone session in each of the rooms (bottom panel).

















Attention






10i 15 20 2






Attention


DemandAlnPly


5; 75-


Attention


20


10-


10 20 30
SESSIONS


50 60


Demand

Play Aon



10 20 30
SESSIONS


Ateto




40 50 60


Figure 3-2. Percentage of intervals (subjects JC and PP) and responses per minute (subjects AB
and TH) across sessions and experimental conditions for cases of SIB maintained by
social positive reinforcement.





DP
m

Z
c,

a
m
W
m
Z

m
r Y


O

0
o-



100-



gj75-



~50
2-







o-





500-






2 5"
2-


10 20


30

DH


100-


S75-



S50-





205


I I I I I I
5 10 15 20 25


5 10 15 20 2.


PM


Ac ;s
m
Z



a
m
W
m
Z
O
a


I II
5 10 15 21


SESSIONS


Figure 3-3. Responses per minute (subjects DP, BR and PM) and percentage of intervals of SIB

(subjects, CM, DH, and AC) across sessions and experimental conditions for cases of
automatic reinforcement.


Alone





Attention DeImand













































5 1() 15



KT


5 1() 15 2() 25


=~e*


Tclc~clcn


4 (
|EM


2 )
























75-

5 ( -


8 () -


4 ()-


2 )


2-




S1-

1 ()


1(( KM


~75-





S2-(


SESSIONS


Figure 3-4. Responses per minute (subjects KB and MJG) and percentage of intervals of SIB

(subjects EM, KBL, KD, KT, and KM) across sessions and experimental conditions
for cases of SIB maintained by automatic reinforcement.



















































_ I __ I __ Im


5 10 15 20 25


S60-


40-



20-













75-



50-


6-
Alone





2_Att~









100- BG



75-

50-


E d~r


manIIUI

mention Play


C .. 1 T I I I

2 4 6 8 10 12


5 10 15 20 25


15~ OL


son JGr


0-


5 10 15 20 25

SESSIONS


40-

30
cl3-


Sz-


SESSIONS


Figure 3-5. Responses per minute (subjects AR and JL) and percentage of intervals of SIB

(subjects JB, GB, JS, and JG) across sessions and experimental conditions for cases
of SIB maintained by automatic reinforcement.














LN

75-


50-


25-




5 10 15 20 25 30 35 40 45
SESSIONS


Attention Play Alone Demand




5 10 15 20 21
SESSIONS


Figure 3-6. Responses per minute (subjects LT) and percentage of intervals of SIB (subject LN)
across sessions and experimental conditions cases of SIB in which source of
reinforcement was not identified.









CHAPTER 4
GENERAL DISCUSSION

Results of the present studies provide information about the distribution, topographical

features, and functional characteristics of SIB in the Prader-Willi Syndrome. The data offer a

somewhat different perspective on SIB as a behavior disorder and may be helpful in the

development of both clinical and research initiatives.

Study 1 examined the prevalence of SIB among 203 individuals with PWS from 28

agencies registered with the PWS USA. Results show ed an SIB prevalence of 58%, which is

much higher than that reported in previous studies that surveyed a large number of individuals

with DD either across multiple facilities within a state or across facilities from multiple states.

The results of several such studies are show n in Table 4-1.

The target populations in the majority of these studies represent total target populations

(i.e., E i\islng often arbitrary, populations) rather than target populations that resulted from

sampling strategies (Rojahn & Esbensen, 2002). The exception in the above studies was Hill and

Bruininks (1984), who first sampled certain community programs and public residential facilities

around the United States, and then identified cases of SIB. The prevalence of SIB estimate in the

current study is higher than the estimates in studies in the above table despite similar methods

used to identify target population. However, the total number of surveyed individuals in these

studies is considerably higher than the number of surveyed individuals in the current study.

Additionally, although the population in the current study consisted of individuals from different

agencies across different states, one might consider all of these agencies to be segregated

facilities containing a relatively homogeneous population of individuals (i.e., individuals with

PWS). A number of prevalence studies that surveyed a smaller number of individuals at a single










(segregated) facility have reported higher SIB prevalence estimates than the studies previously

mentioned. Table 4-2 shows the results of several of such studies.

The range of SIB prevalence estimates in these studies (31% to 65.9%) is more consistent

with the SIB prevalence finding in the current study (58%). Given that surveys from only 28 of

the 50 agencies registered with PWS USA were received, the current study may have failed to

identify a large proportion of individuals with PWS in the country. It is unclear if a lower SIB

prevalence estimate would have been observed if the sample had consisted of a considerably

higher number of individuals with PWS. However, the few registered agencies reported served a

relatively large number of individuals with PWS. One of the two facilities reported to serve the

largest number of individuals with PWS returned surveys for 100% of the individuals they

reported to serve. Of the 63 individuals with PWS at facility where this study was conducted, 43

individuals (68%) were reported to engage in SIB.

Of the 117 individuals in the current study who engaged in SIB, 75% were reported to

engage in skin picking, much higher than the reported prevalence of skin picking in the general

population of individuals with DD, which typically ranges from 16% to 25% (Embersen &

Walker, 1990; Griffin et al., 1986; Rojahn, 1984). However, the SIB prevalence estimate of the

current study is consistent with studies in the PWS literature, which suggest that skin picking

prevalence in PWS ranges from 65% to 97% among children and adults with the diagnosis

(Dykens & Shah, 2003; Wigren & Heimann, 2001). It has been suggested that, in addition to

topographical differences in SIB, bodily locations of SIB differ among diagnostic groups of

individuals with DD (Thompson & Caruso, 2002). For example, Symons and Thompson (1997)

found that 80% of injuries exhibited by individuals with severe intellectual disabilities and

autism occurred on 5% of the body' s surface area (head, hands, finger, and thigh). Yet,









individuals with Cornelia de Lange syndrome typically bite the tips of their fingers (Berney,

Ireland, & Burn, 1999), and individuals with Rett sydrome typically either wring their hands

scratching hands with fingernails or engage in hand mouthing (Normura & Segawa, 1990).

Individuals with PWS have been reported to skin pick their nose, upperarms, forearms, thighs,

knees, lower leg, and feet (Cassidy, 1984; Dykens et al., 1997). Although no formal attempt was

made to catalogue specific body locations of skin picking in the subject population in Study 1,

information from the SIT scale and direct observations of skin picking during Study 2 are

consistent with body locations reported in these studies. It has been suggested that differences

in SIB topography and bodily location of injury among different developmental disabilities may

reflect different different underlying neurochemical mechanisms (Thompson & Caruso, 2002),

although there is no empirical evidence at this time to support this conclusion. Results of

epidemiological studies of functional analyses (e.g., Iwata et al., 1994; Kahng et al, 2002) often

show that individuals with different diagnoses exhibit topographically similar behavior (e.g.,

self-biting). Further, functional analysis results often show that similar topographies of self-

injury serve different functions (e.g., self-biting maintained by social-positive reinforcement vs.

self-biting maintained by social-negative reinforcement). Thus, topographical differences

associated with different disabilities may simply be correlational.

The results of Study 2 showed that a large proportion of subjects exhibited skin picking

primarily when they were alone. One interesting albeit speculative explanation of the

topographical difference of SIB in PWS is that perhaps these individual's physiological makeup

increases sensitivity to certain types of environmental events as reinforcers. Individuals with

PWS are also typically hyperphagic (i.e., they engage in excessive overeating) and, therefore, are

typically morbidly obese. The result is large lipoid deposits and excess skin (often substantial










folds of skin are observed especially in those individuals who lose a considerable amount of

weight). These unique physiological characteristics may create a unique stimulus that evokes a

response (e.g. picking) that, given a genetic sensitivity to automatic reinforcement, strengths that

type of response. This may be especially likely to occur in situations in which alternative

stimulation is low (e.g., individual is alone without preferred items or activities).

An additional speculation regarding topographical differences between SIB in the PWS

and DD populations also relates to the observation that many PWS individuals engage in skin

picking when alone. Although such skin picking may be sensitive to automatic reinforcement,

the behavior may also be influenced by social attention as punishment. That is, it is possible that

these individuals have a long history of care providers socially punishing occurrences of SIB

such that the behavior comes under stimulus control (i.e., occurs in the absence of other people

but does not occur in their presence). Further, picking specific areas of the body in which

evidence of picking (i.e., wounds) is easily hidden from others may avoid social censure. Many

of the subjects in Study 2 who engaged in skin picking in the alone condition tended to pick their

forearms, stomach, hips, thighs and the bottoms of their feet. Clothing typically covers these

areas of the body. Anecdotally, a number of individuals were observed to remove pieces of

clothing at the beginning of alone sessions (following the therapist' s exit from the room). The

end of alone sessions was signaled by a knock on the door and entrance into the room by a

therapist; however, data collectors continued to monitor the room via hidden camera. These

individuals were also observed to quickly replace their clothing immediately following the knock

on the door (either before, or simultaneous with, the therapist' s entrance).

Study 2 showed that the majority of cases of SIB (83%) were maintained by automatic

reinforcement, whereas only 17% of the subjects exhibited attention-maintained SIB. No cases










of escape-maintained SIB were observed. This distribution of functions also differs noticeably

from that reported for SIB in general populations of individuals with DD, for whom the largest

percentage of cases was maintained by social reinforcement (Hanley, 2003; Iwata et al., 1994;

Kahng et al., 2002; Kurtz et al., 2003).

The fact that several subjects' SIB was maintained by social positive reinforcement calls

into question the common conceptualization of SIB as an obsessive-compulsive disorder (OCD).

For these subjects, social consequences were directly responsible for the maintenance of SIB,

which is inconsistent with a conceptualization of SIB as either "obsessive" or "compulsive".

Therefore, these results seem to lend further evidence that SIB in PWS may be sensitive to

environmental influences, which underscores the importance of examining environmental

correlates of behavior disorders regardless of diagnostic label.

Three patterns of responding during a functional analysis are generally indicative of

behavior maintained by automatic reinforcement: (a) the behavior occurs exclusively in the alone

condition, (b) the behavior is consistently higher in the alone condition but occurs during other

conditions as well, or (c) high levels of behavior occur during all conditions. Although these

types of outcomes during a functional analysis effectively rule out social reinforcement as a

source of maintenance, they do not identify the specific type of automatic reinforcement

produced by the behavior. For example, the behavior could be maintained by sensory

stimulation (Kennedy & Souza, 1995; Rincover, 1978) or pain-attenuation (Carr & McDowell,

1980). Although not accounted for by the current study, it is possible that SIB that results in the

production of new wounds provides evidence for an automatic positive reinforcement account

(sensory stimulation), whereas SIB that aggravates existing wounds is evidence for an automatic

negative reinforcement account (pain attenuation). Several individuals in Study 2 exhibited SIB










across assessment conditions. This pattern of responding could be considered consistent with all

of the hypothesized sources of automatic reinforcement. It is also possible that this pattern

suggests the influence of some other source of reinforcement. Regardless, because the behavior

occurred independent of social contingencies and occurred at high rates across all assessment

conditions, the reinforcer responsible for behavioral maintenance was always present, and access

to alternative sources of stimulation in the other conditions did not compete with the reinforcer

maintaining SIB. However, most of the subjects in Study 2 engaged in SIB either exclusively or

almost exclusively in the alone condition as compared to the other conditions. This pattern of

responding suggests at least two possibilities. First, perhaps access to alternative stimulation

(e.g., preferred items in the play condition, task activities in the demand condition, items in the

attention condition) suppressed SIB (i.e., competed with the maintaining reinforcer). Second, the

presence of a therapist in the attention, play, and demand conditions may have been

discriminative for social attention. If these individuals had a history of punishment for engaging

in SIB, the presence of an adult may have suppressed SIB in these conditions. To informally

determine if access to alternative stimulation per se would compete with SIB, two probe sessions

in which preferred items were available but the therapist was absent were conducted with Subject

BG who engaged in SIB exclusively in the alone condition of the functional analysis (Figure 3-5,

middle left panel). Subject BG never engaged in SIB during these sessions (total time, 30 min).

This pattern of responding may have direct implications for treatment of SIB for these

individuals. Specifically, programming noncontingent (or perhaps contingent) access to

preferred items and activities might successfully compete with the reinforcer responsible for SIB.

As previously mentioned, assessment and treatment of automatically-reinforced behavior

can present a challenge because the reinforcer(s) responsible for the behavior are not in direct










control by the therapist. Assessment and treatment is even more challenging when a behavior

occurs covertly (i.e., evidence of a behavior is apparent but the behavior is not observed).

Several features of the results from Study 2 suggest that a number of the cases of SIB were cases

of covert behavior. First, the pattern of responding exhibited by Subject PM (Figure 3-1) was

likely indicative of covert SIB. Anecdotally, JM was observed to engage in other behaviors

indicating that she had detected the presence of the observers during alone sessions conducted in

rooms with observational mirrors. That is, immediately prior to the elimination of responding

during these sessions, JM was observed to stare at the observational mirror, knock on the

window, and wave. However, responding persisted at high levels during alone sessions

conducted in the room equipped with the hidden camera (i.e., the room without an observational

mirror). Second, all the subjects who exhibited exclusive (or almost exclusive) SIB during the

alone condition immediately ceased to engage in SIB at the start of attention sessions (which

were also conducted in the hidden camera room and always conducted immediately following

alone sessions). One limitation of the conclusion that these subjects exhibited covert SIB was

that Study 2 did not contain an explicit control condition (i.e., a condition identical to the alone

condition except for the presence of a therapist). Although it is speculative whether the cases

observed were cases of covert SIB, one implication of this finding is that the SIB prevalence

findings in Study 1 may actually be an underestimate if the data from Study 2 are representative

of the PWS population as a whole.

Future research might focus on improving methods to detect, assess, and treat covert

problem behavior. To date, relatively few studies have examined methods to detect covert

behavior. We used a hidden camera in the present study; another possibility would be the use of

indirect measures of SIB (specifically, the presence of wounds). It has been shown recently that










permanent product measures of SIB are sensitive to treatment contingencies (Twohig & Woods,

2001; Wilson, Iwata, & Bloom, in press); additional data are needed to establish the generality of

this finding. It is possible that SIB is sensitive to remote contingencies placed on response

products. That is, it is the response product that is actually maintained as compared to the

response itself. For example, responding (skin picking) may be suppressed in the presence of

others (because of a history of punishment) and begins to occur covertly because the response

product (wound) eventually produces social reinforcement. Further, few studies have fully

assessed the extent of covert behavior. That is, the assessment of covert behavior in most studies

only included an alone condition (similar to Study 2), without the addition of an explicit control

condition for covert behavior. One notable exception was a study by Paisey and Whitney

(1989), who assessed the pica for a 16-year-old boy with profound mental retardation. The

subject was observed during several assessment conditions including a condition in which

observers were present but did not intervene or interact with the subject and a condition in which

the subject was alone (observers were hidden from view of the subject). The highest level of

pica was observed in the alone condition, suggesting that the behavior was covert.

A number of studies have evaluated treatments for problem behavior reported to be covert

in nature (though only a few were cases of SIB). Maglieri, Deleon, Rodriguez-Catter, and Sevin

(2000) measured food stealing by 1 subject with moderate mental retardation by weighing foods

before and after sessions. The authors found similar reductions in food stealing with both

within-session and post-session reprimands. Ringdahl et al. (2002) observed the stereotypy

(hand flapping) of 1 subject via a camera (not hidden) and found stereotypy to occur only in the

alone condition of the functional analysis. Subsequently, a DRO procedure in which the subject

earned access to preferred items contingent on the absence of hand flapping was successful in










reducing stereotypy to near-zero. Grace, Thompson, and Fisher (1996) used differential

reinforcement of other behavior (DRO), in which reinforcers were delivered contingent on the

absence of tissue damage, to reduce covert SIB for 1 subject. Given the relatively few number of

existing studies of covert SIB and the fact that most of the existing studies consist of either a

single or only a few subjects, further research on detection, assessment, and treatment of covert

SIB is warranted.










Table 4-1. Large-N studies showing SIB prevalence estimates
Study Sample # Setting SIB
Prevalence
Griffin et al. (1986) 2,663 Residential & state 13.6%
schools for MR in
TX
Hill & Bruininks (1984) 2,271 236 national public 14.2%
& private
institutions
Maurice & Trudel (1982) 2,858 3 institutions in 14. 1%
Quebec
Borthwick, Meyers, & Eyman (1981) 6,202 Recipients of DD 19.8%
services in 3 states
Ross (1972) 11,139 Residents of CA 18. 1%
state hospitals
Jacobson (1982) 30,578 Individuals w/MR 8.2%
in NY


Table 4-2. Smaller-N studies showing SIB prevalence estimates
Study Sample # Setting SIB
Prevalence
Rojahn (1984) 91 Residents of a 65.9%
public residential
facility with
severe/profound
MR
Bodfish et al. (1995) 210 Residents of 46.6%
hospital for people
with MR
Emberson & Walker (1990) 525 Residents of a 31%
hospital for people
with MR











APPENDIX A
NATIONAL SURVEY ON SELF-INJURIOUS BEHAVIOR IN THE PRADER-WILLI
SYNDROME


Instructions: Complete Part I for every person you serve. Then examine the list of behaviors in Part II
carefully. If the person (a) has not displayed any of these behaviors (or any other self-injurious behavior) for
the past six months, and (b) is not currently receiving any form of treatment to manage these behaviors,
check the first statement below, then detach and return the first page. Otherwise, check the second statement
below, complete Parts II and III, and then return the entire survey with the requested documentation.



PA RT 1: GENERA L INFORM AT ION


NATIONAL SURVEY ON SELF-INJURIOUS BEHAVIOR (SIB)
IN THE PRADER-WILLI SYNDROME (PWS)


Company/Organization: _

Person completing form:


Date form completed: _


City:


State:


Position:


Phone #:


Client' s initials:


Sex: MF


Age:


Level of functioning: Mild-Moderate / Severe / Profound


Sensory impairments:


_Hearing _Vision


Type of PWS:
Paternal deletion
Maternal Uniparental Disomy (UPD)
Imprinting defect
PWS Like
Translocation
Unknown


Maladaptive Behaviors (other than SIB):
Hoarding things
Food stealing
Temper tantrums (e.g., verbal outbursts, dropping floor)
Aggression
Property destruction
Noncompliance
Stereotypic behavior (repetitive rituals)


O The individual named above has not displayed any self-injurious behavior for the past six months, and is not
receiving any form of treatment or program to manage such behaviors.



O The individual named above has displayed self-injurious behavior within the past six months or is currently
receiving treatment to manage such behaviors.





























SAerophagia: Air swallowing 1 2 3 4 5 1 2 3 12 3

SBiting: Closure of upper and lower teeth on any part of the body 1 2 3 4 5 1 2 3 1 2 3

Body banging: Audible/forceful contact of a body part (other than the head) 1 2 3 4 5 1 2 3 1 2 3
against a stationr object
Body hitting: Audible/forceful contact of one body part against another 1 2 3 4 5 1 2 3 1 2 3
(other than the head)
Bruxism: Teeth grinding 1 2 3 4 5 1 2 3 1 2 3

Choking: Forceful closure of both hands around neck 1 2 3 4 5 1 2 3 1 2 3

Cutting: Applying sharp instrument to body part w/ slicing or chopping motion 1 2 3 4 5 1 2 3 1 2 3
Eye poking/gouging: Forceful contact of a finger within the ocular area 1 2 3 4 5 1 2 3 1 2 3

Hairpulling: Closure of fingers on hair with a pulling motion 1 2 3 4 5 1 2 3 1 2 3

Hand sucking/mouthing: Wetting of fingers or hand against lips or tongue 1 2 3 4 5 1 2 3 1 2 3

Head or face hitting/slapping: Audible/forceful contact of a body part 1 2 3 4 5 1 2 3 1 2 3
against the head or face
Head banging: Audible/forceful contact of the head against a stationary object 1 2 3 4 5 1 2 3 1 2 3
Nail pulling: pulling or pushing of nails away from the skin 1 2 3 4 5 1 2 3 1 2 3

Neck whipping: Forceful and rapid movement of the head 1 2 3 4 5 1 2 3 1 2 3

Orifice digging: Insertion of finger or objects into ears/nose/genital s/rectum 1 2 3 4 5 1 2 3 1 2 3
Pica: Eating nonfood items 1 2 3 4 5 1 2 3 1 2 3

Polydipsia: Drinking excessive amounts of water 1 2 3 4 5 1 2 3 1 2 3

Rumination: Regurgitation and reswallowing of previously ingested food 12345 123 123

Scratching: Raking the skin with fingernail or rubbing against object 1 2 3 4 5 1 2 3 1 2 3

Teeth pulling: Closure of fingers on teeth with a pulling motion 1 2 3 4 5 1 2 3 1 2 3

Throat gouging: Audible/forceful contact of hand or finger against the throat 1 2 3 4 5 1 2 3 1 2 3

Vomiting: Regurgitation (expulsion) of previously ingested food 1 2 3 4 5 1 2 3 1 2 3

Other: List and describe any other form of SIB not included above
12345 123 123


PART II: DESCRIPTION OF SIB

Check any of the following behaviors that have occurred during the past six months (check all that apply). For each behavior that has
occurred, circle a number to indicate its frequency and severity (see keys below).
Frequency Kev: Injury Severity Kev:
1: Occums hourly 1: Has produced loss of sensory or motor function (vision, movement, etc,)
2: Occums at least once a day but not hourly 2: Has produced permanent disfigurement
3: Occums at least once a week but not daily 3: Has produced no permanent damage
4: Occums at least once a month but not weekly
5: Occums less than once a month Medical Care Kev:
1. Has required hospitalization or surgical intervention (sutures, cast, etc.)
2. Has required minor medical care only
3. Has not required any care by a medical professional


Injury Medical
Frequency Severity Care


Behavior












PART III: CURRENT TREATMENT FOR SIB


1. In the past 6 months, has this person received been prescribed medication as treatment of SIB?
Yes, list drugs:
No



2. In the past 6 months, has this person been restrained or has the person worn protective equipment due to SIB?
Yes, indicate: Restraint Protective equipment
No


3. In the past 6 months, has the person received any type of medical treatment for SIB?
Yes, indicate: _Hospitalization _Surgery _Outpatient visit
No


Wound care by nurse


4. Does this person have a formal behavior management program specifically designed to reduce SIB?
Yes
No












APPENDIX B

THE SELF-INJURY TRAUMA (SIT) SCALE
Patient: Examiner: Date:
Part 1: General Description and Summary of Healed Injuries
Check or list each type of self-injurious behavior exhibited by the patient. Next, note any physical evidence of healed injuries
(scars, permanent disfigurement, etc.), along with the specific site.
Self-Injurious Behaviors (check):
Air swallowing aerophagiaa) _Forceful contact wlheadlface _Ingestion of inedible materials (pica)
Biting _Forceful contact wr other body part _Scratching, picking, rubbing skin
_Eye gouging _Hair pulling trichotillomaniaa) _Vomiting or rumination
Other (list):
Healed Injuries (list):
1. 3.
2. 4.

Part 2: Measurement of Surface Trauma
For each area of the body containing a current (unhealed) injury, estimate the number of wounds and note the type and severity of
the worst wound at that particular location. Use the key below to indicate number, type, and severity.


Number: 1: One wound at location 2: Tivo-four wounds at location


3: Five or more wounds at location


Type: AL (Abrasion or laceration): A break in the skin caused by tearing, biting, excessive rubbing, or contact with a sharp
object. Score severity as: (1) Area is red or irritated, with only spotted breaks in the skin: (2) Break in the
skin is distinct but superficial (no avusion); (3) Break in the skin is deep or extensive, or avulsion is present.
CT (Contusion): A distinct area marked by abnormal coloration or swelling, with or without tissue rupture, caused by
forceful contact. Score severity as: (1) Local swelling only or discoloration without swelling; (2) Extensive
swelling; (3) Disfigurement or tissue rupture.


Location
Head:

Scalp
Ear L/R
Eye L/R
Eye Area L/R
Face
Nose
Lips/Tongue
Neck/Throat
Upper Torso:
Shoulder L/R
Chest/Stomach
Back


Seert Location
Lower Torso:
1 23 Abdomen/Pelvis
1 23 Hips/Buttocks
1 23 Genitalia
12 3 Rectum
1 23 Extremities:
12 3 Upper Arm/Elbow L/R
12 3 Lower Arm/Wrist L/R
12 3 Hand/Finger L/R
12 3 Upper Leg/Knee L/R
12 3 Lower leg/Ankle L/R
12 3 Foot/Toe L/R


Number Type


Severity
veri


Number Type


Part 3: Scoring Summary
Number Index (NI)
Add all of the scores in the Number
column (above) and enter the total:_


Severity Index (SI)
Enter the frequency of scores in the
Severity Column: 1_ 2_ 3_


Overall Risk Estimate
Low: No injuries, or any
AL-1, CT-1, or AL
2 except near eyes

luoderate: Any AL-2 near
eyes, Any CT-2
except on head

H igh: Any CT-2 on head,
Any AL-3 or CT-3


NI (Circle) Part 2 Total SI (Circle)
0: No injuries
1: 1-4
2: 5-8
3: 9-12
4: 13-16
5: 17 or more
O 1990 The Florida Center on Self-Injury


Severity scores from Part 2
0: No injuries
1: All severity scores are 1's
2: One 2;No 3' s
3: Two or more 2' s; No 3' s
4: No more than one 3
5: Two or more 3' s











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BIOGRAPHICAL SKETCH

Pamela Neidert began her career in behavior analysis working at the Neurobehavioral Unit

at the Kennedy Krieger Institute (KKI) under the supervision of Dr. Wayne Fisher, while

simultaneously studying special education at Johns Hopkins University. Upon receiving her

M.S. degree in 1999, she began working at the Marcus Institute (MI), under the supervision of

Drs. Wayne Fisher and Cathleen Piazza. While at KKI and MI, Pamela conducted research and

provided clinical services on assessment and treatment of problem behavior displayed by

individuals diagnosed with developmental disabilities. In 2000, Pamela entered the behavior

analysis graduate program at the University of Florida (UF) and worked under the supervision of

Dr. Brian Iwata. While at UF, Pamela continued to conduct clinical research with individuals

with developmental disabilities at various laboratory sites: an adult vocational program, a

hospital inpatient unit for children diagnosed with autism, an outpatient clinic for children

diagnosed with autism, and a school for children diagnosed with developmental disabilities.

While at UF, Pamela received the Behavior Analysis Research Award for contributions to

research as a graduate student. Pamela has begun an academic-research career at Florida

Institute of Technology specializing in disorders of learning and behavior in developmental

disabilities.





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1 P R E V A L E N C E A N D F U N C T I O N S O F S E L F I N J U R I O U S B E H A V I O R I N T H E P R A D E R W I L L I S Y N D R O M E B y P A M E L A L N E I D E R T A D I S S E R T A T I O N P R E S E N T E D T O T H E G R A D U A T E S C H O O L O F T H E U N I V E R S I T Y O F F L O R I D A I N P A R T I A L F U L F I L L M E N T O F T H E R E Q U I R E M E N T S F O R T H E D E G R E E O F D O C T O R O F P H I L O S O P H Y U N I V E R S I T Y O F F L O R I D A 2007

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2 2007 P a m e l a L N e i de r t

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3 A C K N O W L E D G M E N T S I w oul d l i ke t o e xpr e s s m y gr a t i t ude t o t hos e w ho he l pe d m e m a ke t hi s di s s e r t a t i on pos s i bl e I t ha nk m y f a m i l y a nd f r i e nds f or t he i r c on t i nue d e nc our a ge m e nt a nd s uppor t I t ha nk t he unde r gr a dua t e a nd g r a dua t e s t ude nt s f or t he i r v a l ua bl e i nput a nd he l p i n c onduc t i ng t he s e s t udi e s e s pe c i a l l y C l a udi a D oz i e r J e s s i c a T hom a s on, a nd E r i n C a m p. I w oul d a l s o l i ke t o a c know l e dge t he s uppor t a nd a s s i s t a nc e of t hos e w ho s e r ve d on m y c om m i t t e e : D r s J e s s e D a l l e r y, J e nni f e r E l de r S c ot t M i l l e r a nd T i m ot hy V ol l m e r S pe c i a l t ha nks go t o D r B r i a n I w a t a f or hi s i nva l ua bl e s uppor t a nd gu i da nc e t hr oughout m y gr a dua t e c a r e e r

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4 T A B L E O F C O N T E N T S pa g e A C K N O W L E D G M E N T S . . . . . . . . . . . . . . . . . . . . . . . . . . 3 L I S T O F T A B L E S . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 L I S T O F F I G U R E S . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 C H A P T E R 1 I N T R O D U C T I O N . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 2 S T U D Y 1: P R E V A L E N C E O F S E L F I N J U R I O U S B E H A V I O R I N T H E P R A D E R W I L L I S Y N D R O M E . . . . . . . . . . . . . . . . . . . . . . . . . . 14 M e t hod . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 S ubj e c t s . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 S ur ve y I ns t r um e nt a nd P r oc e dur e . . . . . . . . . . . . . . . . . . . . 14 R e s ul t s a nd D i s c us s i on . . . . . . . . . . . . . . . . . . . . . . . . . 16 3 S T U D Y 2: P R E V A L E N C E O F F U N C T I O N S O F S E L F I N J U R I O U S B E H A V I O R I N T H E P R A D E R W I L L I S Y N D R O M E . . . . . . . . . . . . . . . . . . . . 23 M e t hod . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 S ubj e c t s a nd S e t t i ngs . . . . . . . . . . . . . . . . . . . . . . . . 23 S e l f I nj u r y T r a um a ( S I T ) S c a l e . . . . . . . . . . . . . . . . . . . . 23 R e s pons e M e a s ur e m e nt a nd R e l i a bi l i t y . . . . . . . . . . . . . . . . . 24 P r oc e dur e s . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 R e s ul t s a nd D i s c us s i on . . . . . . . . . . . . . . . . . . . . . . . . . 28 4 G E N E R A L D I S C U S S I O N . . . . . . . . . . . . . . . . . . . . . . . . 40 A P P E N D I X A N A T I O N A L S U R V E Y O N S E L F I N J U R I O U S B E H A V I O R I N T H E P R A D E R W I L L I S Y N D R O M E . . . . . . . . . . . . . . . . . . . . . . . . . . 50 B T H E S E L F I N J U R Y T R A U M A ( S I T ) S C A L E . . . . . . . . . . . . . . . . 53 L I S T O F R E F E R E N C E S . . . . . . . . . . . . . . . . . . . . . . . . . . 54 B I O G R A P H I C A L S K E T C H . . . . . . . . . . . . . . . . . . . . . . . . . 62

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5 L I S T O F T A B L E S T a bl e pa ge 2 1 D e m ogr a phi c c ha r a c t e r i s t i c s of s ubj e c t s a m pl e . . . . . . . . . . . . . . . 19 2 2 F r e que nc y a nd pe r c e nt o f S I B t opogr a phy f r e que nc y, s e ve r i t y, a nd m e di c a l c a r e . . 20 2 3 C om pa r i s ons of S I B p r e va l e nc e f i ndi ngs by t opog r a phy . . . . . . . . . . . . 21 2 4 F r e que nc y a nd pe r c e nt o f r e po r t e d t r e a t m e nt f or S I B . . . . . . . . . . . . . 21 3 1 S ubj e c t c ha r a c t e r i s t i c s . . . . . . . . . . . . . . . . . . . . . . . . 32 3 2 D i s t r i but i on of S I B f unc t i ons i n c u r r e nt P W S popu l a t i on c om pa r e d t o D D popul a t i on 33 4 1 L a r ge N s t udi e s s how i ng S I B p r e va l e nc e e s t i m a t e s . . . . . . . . . . . . . 49 4 2 S m a l l e r N s t udi e s s how i ng S I B p r e va l e nc e e s t i m a t e s . . . . . . . . . . . . . 49

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6 L I S T O F F I G U R E S F i gur e pa ge 2 1 F r e que nc y pl ot s of s ki n pi c ki ng f r e que nc y, i nj ur y s e ve r i t y, a nd m e di c a l c a r e r e qui r e m e nt s . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 3 1 F r e que nc y of S I B dur i ng f i r s t a l one s e s s i on c onduc t e d i n t hr e e d i f f e r e nt s e s s i on r oom s ( t op pa ne l ) C um ul a t i ve f r e que nc y of S I B d ur i ng c ons e c ut i ve 10 s i nt e r va l s of a l one s e s s i on i n e a c h of t he r oom s ( bot t om pa ne l ) . . . . . . . . . . . . . 34 3 2 P e r c e nt a ge of i nt e r va l s ( s ubj e c t s J C a nd P P ) a nd r e s pons e s pe r m i nut e ( s ubj e c t s A B a nd T H ) a c r os s s e s s i on s a nd e xpe r i m e nt a l c ondi t i o ns f or c a s e s of S I B m a i nt a i ne d by s oc i a l pos i t i ve r e i nf or c e m e nt . . . . . . . . . . . . . . . . . . . . . . 35 3 3 R e s pons e s pe r m i nut e ( s ubj e c t s D P B R a n d P M ) a nd pe r c e nt a ge of i n t e r va l s of S I B ( s ubj e c t s C M D H a nd A C ) a c r os s s e s s i ons a nd e xpe r i m e nt a l c ondi t i ons f o r c a s e s of a ut om a t i c r e i nf or c m e nt . . . . . . . . . . . . . . . . . . . . . . . . 36 3 4 R e s pons e s pe r m i nut e ( s ubj e c t s K B a nd M J G ) a nd pe r c e nt a ge of i nt e r va l s o f S I B ( s ubj e c t s E M K B L K D K T a nd K M ) a c r os s s e s s i ons a nd e xpe r i m e nt a l c ondi t i ons f or c a s e s of S I B m a i nt a i ne d by a ut om a t i c r e i n f or c e m e nt . . . . . . . . . . . . 37 3 5 R e s pons e s pe r m i nut e ( s ubj e c t s A R a nd J L ) a nd pe r c e nt a ge of i nt e r va l s o f S I B ( s ubj e c t s J B G B J S a nd J G ) a c r os s s e s s i ons a nd e xpe r i m e nt a l c ondi t i ons f or c a s e s of S I B m a i nt a i ne d by a ut om a t i c r e i nf o r c e m e nt . . . . . . . . . . . . . . . 38 3 6 R e s pons e s pe r m i nut e ( s ubj e c t s L T ) a nd pe r c e nt a ge of i nt e r va l s of S I B ( s ubj e c t L N ) a c r os s s e s s i ons a nd e xpe r i m e nt a l c ondi t i ons c a s e s of S I B i n w hi c h s our c e of r e i nf or c e m e nt w a s not i de nt i f i e d. . . . . . . . . . . . . . . . . . . . . 39

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7 A bs t r a c t of D i s s e r t a t i on P r e s e nt e d t o t he G r a dua t e S c hool of t he U ni ve r s i t y of F l or i da i n P a r t i a l F u l f i l l m e nt o f t he R e qui r e m e nt s f or t he D e g r e e of D oc t o r of P hi l os o phy P R E V A L E N C E A N D F U N C T I O N S O F S E L F I N J U R I O U S B E H A V I O R I N T H E P R A D E R W I L L I S Y N D R O M E B y P a m e l a L N e i de r t A ugus t 2007 C ha i r : B r i a n A I w a t a M a j or : P s yc hol ogy I ndi vi dua l s w i t h P r a de r W i l l i s yndr om e a ge ne t i c di s or de r c ha r a c t e r i z e d by m e nt a l r e t a r da t i on, e xc e s s i ve ove r e a t i ng, a nd e xt r e m e obe s i t y, c om m onl y e nga ge i n num e r ous f or m s o f s e l f i nj ur i ous be ha vi or ( S I B ) I n t he c ur r e nt s t udy, w e a t t e m pt e d t o i de nt i f y t he pr e va l e nc e a nd f unc t i ons of S I B i n t he P r a de r W i l l i s yndr om e I n S t udy 1, w e a dm i ni s t e r e d a que s t i onna i r e t o t he c a r e pr ovi de r / r e s i de nt i a l l i vi ng a ge nc i e s r e gi s t e r e d w i t h t he N a t i ona l P r a de r W i l l i A s s oc i a t i on of t he U S A T he que s t i onna i r e w a s de s i gne d t o i de nt i f y t he pr e va l e nc e of S I B i n i ndi vi dua l s w i t h P r a de r W i l l i s yndr o m e a s w e l l a s t he t opogr a phy f r e que nc y, a nd s e ve r i t y of S I B S t udy 1 s how e d a r e l a t i ve l y hi gh pr e va l e nc e of S I B i n P W S ( 58% ) S k i n pi c ki ng w a s t he m os t c om m onl y r e por t e d t opogr a phy I n S t udy 2 w e c onduc t e d f unc t i ona l a na l ys e s w i t h a s ubs e t of i ndi vi dua l s f r om S t udy 1 t o i de nt i f y t he m os t c om m on va r i a bl e s r e s pons i bl e f or t he m a i nt e na nc e of S I B R e s ul t s s ho w e d t he m a j or i t y of S I B w a s m a i nt a i ne d by a ut om a t i c r e i nf or c e m e nt a nd, t o a l e s s e r e xt e nt s oc i a l pos i t i v e r e i nf or c e m e nt R e s ul t s a r e di s c us s e d i n t e r m s of i m p l i c a t i ons f or t r e a t m e nt de ve l opm e nt

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8 C H A P T E R 1 I N T R O D U C T I O N S e l f i nj ur i ous be ha vi o r ( S I B ) i s de f i ne d a s a ny be h a vi or t ha t p r oduc e s i nj ur y t o a n i ndi vi dua l s ow n body ( T a t e & B a r of f 1966 ) C om m onl y obs e r ve d t opogr a phi e s i nc l ude he a d ba ngi ng, s e l f bi t i ng a nd s e l f s c r a t c hi ng ( R oj a hn, 1 994) T he e s t i m a t e d pr e va l e nc e of S I B i s r e por t e d t o be be t w e e n 5% t o 23% a m ong i ndi vi du a l s w i t h de ve l opm e nt a l di s a bi l i t i e s ( D D ) ( G r i f f i n W i l l i a m s S t a r k, A l t m e ye r & M a s on, 198 6; J a c obs on, 1982; M a ur i c e & T r ude l 1982) but c a n va r y w i de l y i n d i f f e r e nt s ubgoups F o r e xa m pl e S I B ha s be e n f ound t o oc c ur a l m os t uni ve r s a l l y w i t h i ndi vi dua l s w i t h L e s c h N yha n s yn dr om e but ha s be e n f ound t o oc c ur i nf r e que nt l y i n ot he r di s a bi l i t i e s s uc h a s D ow n s yndr om e e xc e pt i n c a s e s of s e ve r e t o pr of ound m e nt a l r e t a r da t i on. ( T hom ps on & C a r us o, 2002) T hom ps on a nd C a r us o ( 2002 ) s ugge s t e d s e ve r a l di s t i ngui s hi ng c ha r a c t e r i s t i c s of S I B i n t he D D popul a t i on ( pa r t i c ul a r l y a m ong i ndi vi dua l s w i t h m ode r a t e t o s e ve r e i nt e l l e c t ua l di s a bi l i t i e s ) t ha t c a n be c ons i de r e d di s t i nc t f r om S I B obs e r ve d i n i ndi vi dua l s w i t h ps yc hi a t r i c di s or de r s ( e g. s e l f m ut i l a t i on) F i r s t t he be ha vi or t ypi c a l l y i nvo l ve s r e pe t i t i ve m ove m e nt s of body pa r t s ( e g. l i m bs he a d, t r unk, e t c ) t ha t pr oduc e phys i c a l da m a ge S e c ond, t he be ha vi or i s e pi s odi c ( i e oc c ur s i n di s c r e t e bout s ) a nd oc c ur s m a ny t i m e s pe r da y. T he r e a r e s i gni f i c a nt he a l t h r i s ks a s s oc i a t e d w i t h S I B C om m onl y obs e r ve d phys i c a l i nj ur i e s i nc l ude t i s s ue l a c e r a t i ons a nd c ont us i ons pe r m a ne nt s c a r r i ng a nd c a l l us f or m a t i on a nd r e t i na l de t a c hm e nt ( H ym a n F i s he r M e r c ugl i a no, & C a t a l do, 1990) I n a ddi t i on t o t he i n j ur y t ha t i t m a y c a us e S I B o f t e n i nt e r f e r e s w i t h a c a de m i c s e l f c a r e or voc a t i ona l i ns t r uc t i on a nd m a y l i m i t a n i ndi vi dua l t o r e s t r i c t i ve l i vi ng pl a c e m e nt s ( R oj a hn & E s be ns e n, 2002) F ur t he r F a ve l l M c G i m s e y, a nd S c he l l ( 1982) s ugge s t e d t ha t phys i c a l a nd c he m i c a l r e s t r a i nt s of t e n

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9 r e qui r e d f o r pr o t e c t i on m a y no t onl y pr e ve nt e nga g e m e nt i n t he r a pe ut i c l e a r ni ng a c t i vi t i e s but m a y t he m s e l ve s r e s ul t i n phys i c a l da m a ge ( e g m us c l e a t r ophy, m e di c a t i on s i de e f f e c t s e t c ) A l t hough dr ugs a nd c he m i c a l a nd phys i c a l r e s t r a i n t ha ve be e n us e d i n a t t e m pt t o e l i m i na t e S I B t he gr e a t e s t s uc c e s s ha s be e n f ound us i ng m e t hods ba s e d on ope r a nt c ondi t i oni ng ( I w a t a 1994) a l t hough t he s pe c i f i c f or m s o f i nt e r ve nt i o n ha ve c ha nge d ove r t he ye a r s J ohns on a nd B a um e i s t e r ( 1978) r e vi e w e d s t udi e s publ i s he d f r o m 1965 t o 1976 a nd f ound e l e c t r i c s hoc k t o be t he m os t c om m onl y r e por t e d t r e a t m e nt f o r S I B f ol l ow e d by di f f e r e nt i a l r e i nf or c e m e nt G o r da n S m i t h a nd M a t s on ( 1985 ) r e vi e w e d s t udi e s publ i s h e d f r om 1976 t o 1983 a nd f ound t ha t ove r c or r e c t i on ha d r e pl a c e d s hoc k a s t he m os t c om m on t r e a t m e nt f or S I B K a hng, I w a t a a nd L e w i n ( 2002) r e vi e w e d s t udi e s publ i s he d f r om 19 64 t o 1999 a nd f ound t ha t s t udi e s on r e i nf or c e m e nt a nd pun i s hm e nt w e r e publ i s he d a t r oughl y e qua l r a t e s t hr oughou t t he 1970s a nd 1980s ; how e ve r a s ha r p i nc r e a s i ng t r e nd i n t he us e of r e i nf or c e m e nt ba s e d s t udi e s w a s obs e r ve d s i nc e t he e a r l y 1990s w hi l e a gr a dua l de c r e a s i ng t r e nd i n puni s hm e nt ba s e d s t udi e s w a s obs e r ve d. T he i nc r e a s e i n r e i nf o r c e m e nt ba s e d r e s e a r c h ha s be e n, a t l e a s t i n pa r t i nf l ue nc e d by t he de ve l opm e nt of pr oc e dur e s de s i gne d t o i de nt i f y t he c a us e s of S I B r a t he r t ha n m e r e l y t he e va l ua t i on of pr oc e dur e s t o r e duc e t he be ha vi or ( P e l i os M or r e n, T e s c h, & A xe l r od, 1999) I n f a c t K a hng e t a l ( 2002) not e d a h i gh de gr e e of c o r r e s ponde nc e be t w e e n t he us e of f unc t i ona l a na l ys i s a s s e s s m e nt pr oc e dur e s a nd t he s e l e c t i on o f r e i nf o r c e m e nt ba s e d i nt e r ve nt i ons i n t he i r r e vi e w I n a c onc e pt ua l r e vi e w of r e s e a r c h on S I B C a r r ( 1 977) s ugge s t e d s e ve r a l pot e nt i a l de t e r m i na nt s of S I B i nc l udi ng t he s oc i a l pos i t i ve r e i nf or c e m e nt hypot he s i s ( S I B f unc t i ons t o pr oduc e a s s e s s t o e nvi r onm e nt a l e ve nt s vi a a s oc i a l a ge nt ) t he s oc i a l ne ga t i ve r e i nf or c e m e nt hypot he s i s ( S I B f unc t i ons t o t e r m i na t e o r a voi d a n a ve r s i ve e nvi r onm e nt a l s t i m ul us ) t he s e l f

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10 s t i m ul a t i on hypot he s i s ( S I B f unc t i ons t o p r oduc e t a c t i l e ve s t i bul a r or k i ne s t he t i c s t i m ul a t i on) a nd t he or ga ni c hypot he s i s ( S I B i s a p r oduc t o f a be r r a nt phys i ol ogi c a l p r oc e s s e s of a ge ne t i c or i gi n, a s i n L e s c h N yha n s yndr om e or of nonge n e t i c or i gi n, a s i n e l e va t e d pa i n t hr e s hol ds or m e di c a l c ondi t i ons ) A num be r of e m pi r i c a l s t udi e s de m ons t r a t e d r e l a t i ons be t w e e n a s pe c i f i c e nvi r onm e nt a l e ve nt a nd S I B ( L ova a s & S i m m ons 1969; C a r r N e w s om & B i nko f f 1976; W e e ks & G a yl or d R os s 1981) H ow e ve r I w a t a D or s e y, S l i f e r B a um a n, a nd R i c hm a n ( 1982/ 1994) de s c r i be d t he f i r s t c om pr e he ns i ve f un c t i ona l a na l ys i s m ode l t o a s s e s s m ul t i pl e s our c e s of r e i nf or c e m e nt f or S I B N i ne p a r t i c i pa nt s w e r e obs e r ve d dur i ng b r i e f r e pe a t e d e xpos ur e t o a s e r i e s of 4 c ondi t i ons c ons i s t i ng of t he de l i ve r y of a t t e nt i on c ont i nge nt on S I B ( t e s t f or s oc i a l pos i t i ve r e i nf or c e m e nt ) t he r e m ova l o f t a s k de m a nds c ont i nge nt on S I B ( t e s t f or s oc i a l ne ga t i ve r e i nf or c e m e nt ) a r e l a t i ve l y ba r r e n e nvi r o nm e nt i n w hi c h no c ons e que nc e s w e r e de l i ve r e d f ol l ow i ng S I B ( t e s t f or a ut om a t i c r e i nf or c e m e nt ) a nd a c ont r ol c ondi t i on i n w hi c h no t a s ks w e r e pr e s e nt e d a nd a c c e s s t o l e i s ur e m a t e r i a l s a nd a t t e nt i on w a s a va i l a bl e on a nonc ont i nge nt ba s i s S i x of t he 9 pa r t i c i pa nt s e xhi bi t e d hi ghe r r a t e s of S I B i n one of t he t e s t c ondi t i ons i ndi c a t i ng t ha t S I B c a n be m a i nt a i ne d by di f f e r e nt s our c e s of r e i nf or c e m e nt F unc t i ona l a na l ys i s m e t hodol ogy ha s be c om e t he a s s e s s m e nt t ool of c hoi c e i n a ppl i e d be ha vi or a na l ys i s be c a us e i t i de nt i f i e s e nvi r onm e nt a l e ve nt s t ha t i nf l ue nc e p r obl e m be ha vi or a nd pr ovi de s a n e m pi r i c a l ba s i s f o r de ve l opi ng t r e a t m e nt s t ha t a l t e r t he c ont i nge nc i e s di r e c t l y r e s pons i bl e f or m a i nt a i ni ng pr obl e m be ha vi or O v e r t he pa s t 20 ye a r s f unc t i ona l a na l ys i s m e t hodol ogy ha s be e n s uc c e s s f ul l y e xt e nde d f r om i t s i ni t i a l f oc us on S I B t o ot he r popul a t i ons a nd f or m s of pr obl e m be ha vi or ( D e r by e t a l 1987 ; M a c e & K ni ght 1986; N or t hup e t a l 1995; N or t hup, C i g r a nd, & A s m us 1992; O R e i l l y, 1995 ) T he r e s ul t ha s be e n t he w i de s pr e a d a dopt i on o f f unc t i ona l a na l ys i s m e t hodol ogi e s by bot h r e s e a r c he r s a nd c l i ni c i a ns T he 1989

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11 N a t i ona l I ns t i t ut e of H e a l t h ( N I H ) c ons e ns us pa ne l on t he t r e a t m e nt o f de s t r uc t i ve be ha vi or s i n t he D D popul a t i on r e c om m e nde d t ha t t r e a t m e nt of s e ve r e be ha vi or di s or de r s be b a s e d on t he r e s ul t s of f unc t i ona l a na l ys e s ( N I H 1989 ) S i m i l a r l y, t he 1997 r e a ut hor i z a t i on o f t he I ndi vi dua l s w i t h D i s a bi l i t i e s E duc a t i on A c t c ont a i ne d a m a nda t e r e qui r i ng t he us e of a f unc t i ona l be ha vi or a s s e s s m e nt pr i or t o a c ha nge i n pl a c e m e nt f or a s t ude nt w i t h a be ha vi or di s or de r A l t hough f unc t i ona l a na l ys i s r e s e a r c h t ypi c a l l y f oc us e s on a s s e s s m e nt a nd t r e a t m e nt of pr obl e m be ha vi or a t t he l e ve l of t he i ndi vi dua l t he m e t hodol ogy m i gh t a l s o s e r ve a s a m e a ns f o r c onduc t i ng e pi de m i ol ogi c a l s t udi e s of be ha vi or a l f unc t i on. T ha t i s a c c um ul a t i on o f e xpe r i m e nt a l da t a ove r t i m e w i t h a l a r ge num be r o f s ubj e c t s w oul d be he l pf ul i n e s t a bl i s hi ng a da t a ba s e on t he f unc t i ona l c ha r a c t e r i s t i c s of S I B t ha t w oul d be di f f i c ul t t o e s t a bl i s h ove r t he s hor t i nt e r va l s of t i m e t yp i c a l l y us e d i n s t udi e s of i nc i de nc e or pr e va l e nc e ( I w a t a e t a l 1994 ) S e ve r a l l a r ge s c a l e s t udi e s ha ve be e n c onduc t e d t o i de nt i f y t he m os t c om m on f unc t i ons f o r S I B i n t he D D popul a t i on. I w a t a e t a l ( 1994 ) s um m a r i z e d da t a f r om 152 f unc t i o na l a na l ys e s dr a w n f r om t he s a m e s a m pl e a nd not e d t ha t s oc i a l ne ga t i ve r e i nf or c e m e nt w a s t he m os t c om m on f unc t i on of S I B I n a s ubs e que nt m e t a a na l ys i s of t he t r e a t m e nt l i t e r a t ur e on S I B K a hng e t a l ( 2002) e xa m i ne d 265 da t a s e t s f r om 396 s t udi e s T ha t i s onl y e xpe r i m e nt a l da t a s e t s w e r e i nc l ude d i n t he m e t a a na l ys i s ; s t udi e s t ha t i nc l ude d i ndi r e c t o r de s c r i pt i ve f unc t i ona l a s s e s s m e nt s w e r e e xc l ude d. T he a na l ys i s a l s o i ndi c a t e d t ha t s o c i a l ne ga t i ve r e i nf or c e m e nt w a s t he m os t c om m on. I n a m or e ge ne r a l r e vi e w o f t he l i t e r a t ur e on f unc t i ona l a na l ys i s H a nl e y, I w a t a a nd M c C or d ( 2003) s um m a r i z e d 536 da t a s e t s a nd f ou nd s i m i l a r pe r c e nt a ge s f or bot h s oc i a l pos i t i ve r e i nf or c e m e nt a nd s oc i a l ne ga t i ve r e i nf or c e m e nt F i na l l y, K u r t z e t a l ( 2003) s um m a r i z e d 30 d a t a s e t s i n w hi c h t he a na l ys e s f oc us e d s pe c i f i c a l l y on young c hi l dr e n unde r t he a ge o f f our a nd f ound s oc i a l pos i t i ve r e i n f or c e m e nt a s t he m os t c om m on f unc t i on

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12 A s pr e vi ous l y m e nt i one d, t he a ppe a r a nc e of S I B h a s be e n c or r e l a t e d w i t h s e ve r a l ge ne t i c s yn dr om e s s uc h a s L e s c h N yha n s yndr om e ( r e por t e d pr e va l e nc e i s 100% ; A nde r s on & E r ns t 1994) P r a de r W i l l i s yndr om e ( r e por t e d pr e va l e nc e i s 60 80% ; S ym ons B ut l e r S a nde r s F e u r e r & T hom ps on, 1999 ) S m i t h M a ge ni s s yndr om e ( r e por t e d pr e va l e nc e i s 50% t o 70 % ; S m i t h, D yke ns & G r e e nbe r g, 1998) a nd R e t t s yndr om e ( r e por t e d pr e va l e nc e i s 30% t o 40% ; S a ns om K r i s hna n, & C or be t t 1993) T he f oc us of t hi s s t ud y i s on S I B i n t he P r a de r W i l l i s yndr om e P r a de r W i l l i s yndr om e ( P W S ) i s a ge ne t i c di s or d e r i nvol vi ng c hr om os om e 15 ( P r a de r L a bha r t & W i l l i 1956 ) P W S i s r e por t e d t o oc c ur i n a ppr oxi m a t e l y 1 i n 20 000 bi r t hs t hough t hi s m a y be a n unde r e s t i m a t e be c a us e m a ny i ndi vi dua l s w i t h P W S a r e be l i e ve d t o be undi a gnos e d ( W hi t t i ngt on e t a l 2001) M os t i ndi vi dua l s w i t h P W S f unc t i on i n t he m i l d r a nge of i nt e l l e c t ua l di s a bi l i t y ( D yke ns & S ha h 2003 ) T he r e a r e a num be r of c om m on be ha vi or a l c ha r a c t e r i s t i c s of t he s yndr om e t he m os t s t r i ki ng o f w hi c h i s hype r pha gi a ( e xc e s s i ve e a t i ng) I ndi vi dua l s w i t h P W S of t e n di s pl a y f ood r e l a t e d p r obl e m be ha vi or s t ha t i nc l ude ove r e a t i ng, f ood s t e a l i ng, a nd pi c a T he y a r e a l s o r e por t e d t o e nga ge i n r i t ua l i s t i c r e pe t i t i ve a nd ot he r p r obl e m be ha vi or s i nc l udi ng a ggr e s s i on, t a nt r u m s a nd p r op e r t y de s t r uc t i on, a nd S I B S ki n pi c ki ng ha s be e n r e por t e d t o be t he m os t c om m on t opogr a phy o f S I B i n t he P W S popul a t i on, w i t h a n e s t i m a t e d pr e va l e nc e r a ngi ng f r om 65% t o 97 % ( D yke ns & S ha h, 2003) W i gr e n a nd H e i m a nn ( 2001 ) not e d t ha t s ki n p i c ki n g i n P W S t ypi c a l l y oc c ur s be f or e a ge 11 a nd t ha t t he be ha vi or t e nds t o r e m a i n s t a bl e ove r t i m e t hough t he r e s e e m s t o be s om e va r i a bi l i t y i n t e r m s of bot h i nc i de nc e a nd f r e que nc y. A num be r of a ut hor s ha ve s ugge s t e d t ha t t he oc c ur r e nc e of s ki n pi c ki ng s e e m s t o be i nde pe nde nt of bot h ge nde r a nd l e ve l o f i nt e l l e c t ua l f unc t i oni ng ( D yke ns & C a s s i dy, 1995; S t e i n e t a l 1994; W i gr e n & H e i m a nn, 2001 ) P W S pr a c t i t i one r s c om m onl y r e f e r t o s uc h pi c ki ng a s a n obs e s s i ve c om pul s i ve be ha vi or i nhe r e nt t o t he s yndr om e

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13 ( D yke ns & S ha h, 2003 ) T hi s c onc e pt ua l i z a t i on s e e m s t o i m pl y t ha t t he be ha vi o r i s r e f l e xi ve or bi ol ogi c a l i n na t ur e a nd r a i s e s que s t i ons a bout t he be ha vi or s s e ns i t i vi t y t o e nvi r onm e nt a l va r i a bl e s A ddi t i ona l l y i t i s unc l e a r w he t he r i ndi v i dua l s w i t h P W S a l s o e nga ge i n S I B t opogr a phi e s c om m onl y r e por t e d i n t he D D popul a t i on a s a w hol e s uc h a s he a d ba ngi ng, s e l f bi t i ng, e t c G i ve n bot h t he r e por t e d hi gh pr e va l e nc e of S I B ( m os t not a bl y s ki n pi c ki ng) i n P W S a nd t he s uc c e s s of f unc t i ona l a na l ys i s m e t hodol ogy a s a t ool f o r i de nt i f yi ng de t e r m i na nt s of S I B t he pur pos e of t hi s s t udy w a s t w o f ol d. T he pu r pos e of S t udy 1 w a s t o i de nt i f y t he pr e va l e nc e of S I B i n i nd i vi dua l s w i t h P W S a s w e l l a s t he t opog r a phy, f r e que nc y, a nd s e ve r i t y of S I B T he pur pos e of S t udy 2 w a s t o i de nt i f y f unc t i ona l c ha r a c t e r i s t i c s of S I B w i t h a s ubs e t of t he s e i ndi vi dua l s

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14 C H A P T E R 2 S T U D Y 1: P R E V A L E N C E O F S E L F I N J U R I O U S B E H A V I O R I N T H E P R A D E R W I L L I S Y N D R O M E M e t h od S u b j e c t s I n a n a t t e m pt t o i de nt i f y a na t i ona l s a m pl e of i ndi v i dua l s w i t h P W S w e c ont a c t e d t he c a r e pr ovi de r a ge nc i e s r e gi s t e r e d w i t h t he P r a de r W i l l i S yndr om e A s s oc i a t i on of t he U S A ( P W S A U S A ) P W S A U S A w a s or ga ni z e d i n 1975 a s a r e s our c e f or e duc a t i on a nd i nf o r m a t i on a bout P W S t o pa r e nt s pr o f e s s i ona l s a nd ot he r i nt e r e s t e d pa r t i e s F i f t y a ge nc i e s w e r e i de nt i f i e d f r om t he pr ovi de r da t a ba s e m a i nt a i ne d by t he P W S A U S A w e bs i t e T he c oor di na t o r s / a dm i ni s t r a t or s of t he s e a ge nc i e s w e r e a s ke d t o c om pl e t e a nd r e t ur n a s ur ve y f o r e a c h i ndi v i dua l w i t h P W S t ha t t he y s e r ve d. S ur ve ys w e r e r e c e i ve d f r om 28 of t he 50 s e r vi c e pr ovi de r s yi e l di ng a s ubj e c t s a m pl e of 203. T he a ve r a ge s ubj e c t a ge w a s 32 ye a r s ( r a nge 11 ye a r s t o 58 ye a r s ) D e m ogr a phi c c ha r a c t e r i s t i c s of t he s a m pl e ( i e ge nde r l e ve l o f f unc t i oni ng, pr e s e nc e of s e ns or y i m pa i r m e nt s a nd ge ne t i c s ubt ype of P W S ) a r e s how n i n T a bl e 2 1. T he s a m pl e c ons i s t e d of 89 m a l e s a nd 112 f e m a l e s ( t he ge nde r o f 2 i ndi vi dua l s w a s not r e por t e d) T he m a j or i t y ( 83% ) of i ndi vi dua l s w e r e c l a s s i f i e d a s ha vi ng m i l d m ode r a t e m e nt a l r e t a r da t i on. T he ge ne t i c s ubt ype of P W S w a s i de nt i f i e d i n onl y 5 0% of c a s e s O ve r ha l f of t he i ndi vi dua l s e xhi bi t e d pr obl e m be ha vi or s ot he r t ha n S I B w i t h t he e xc e pt i on of s t e r e ot ypy, w hi c h w a s r e por t e d i n 23 % of t he popul a t i on. O f t he 203 s ubj e c t s s ur ve ye d, 117 ( 58 % ) w e r e r e por t e d t o e nga ge i n S I B S u r ve y I n s t r u m e n t an d P r oc e d u r e A S ur ve y on S e l f I nj ur i ous B e ha vi or ( S I B ) i n t he P r a de r W i l l i S yndr om e ( P W S ) w a s de ve l ope d f or t he pur pos e s of t he c ur r e nt s t udy. S ur ve ys w e r e s e nt vi a pos t a nd e l e c t r on i c m a i l t o t he c oor di na t o r s / a dm i ni s t r a t or s of e a c h a ge nc y r e gi s t e r e d w i t h P W S A U S A w ho w e r e a s ke d

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15 t o c om pl e t e a nd r e t ur n a s ur ve y f o r e a c h i ndi vi dua l w i t h P W S w hom t he y s e r ve d. A l e t t e r de t a i l i ng t he pur pos e o f t he s ur ve y a nd ge ne r a l i ns t r uc t i ons f or s ur ve y c om pl e t i on a c c om pa ni e d t he s ur ve y. T he s ur ve y w a s a 3 pa r t que s t i onn a i r e P a r t 1 r e qu e s t e d ba s i c i nf or m a t i on a bout t he i ndi vi dua l ( ge nde r a ge l e ve l of f unc t i oni ng p r e s e nc e of s e ns or y i m pa i r m e nt s ge ne t i c s ubt ype of P W S a nd p r e s e nc e of m a l a da pt i ve be ha vi or s ) R e s ponde nt s w e r e i ns t r uc t e d t o c om pl e t e t he f i na l t w o s e c t i o ns of t he s ur ve y onl y f o r s ubj e c t s w ho ha d di s pl a ye d S I B w i t hi n 6 m ont hs of t he t i m e of s ur ve y c om pl e t i on. P a r t 2 r e que s t e d a s pe c i f i c de s c r i pt i on o f t he t opogr a phi e s of S I B e xhi bi t e d by t he i ndi vi dua l R e s ponde nt s i ndi c a t e d w hi c h, i f a ny s e l f i nj u r i ous t opogr a phi e s ha d be e n obs e r ve d, a nd t he n us e d a num e r i c s c a l e t o de s c r i be t he f r e que nc y o f e a c h t opogr a phy of S I B ( 1 5 1 = hou r l y, 5 = l e s s t ha n m ont hl y) A l i s t of t opogr a phi e s of S I B w a s de ve l ope d f r om a r e vi e w of r e s pons e s r e por t e d by s e ve r a l s t udi e s of S I B i n t he D D popul a t i on ( B a r r on & S a ndm a n, 1984; G r i f f i n e t a l 1986; I w a t a e t a l 1 994; R oj a hn & E s be ns e n, 2002) T he l i s t c ons i s t e d of 22 t opogr a phi e s a s w e l l a s t he opt i on t o r e por t ot he r f or m s o f S I B not i nc l ude d. B e c a us e t he r i s k a s s oc i a t e d w i t h S I B ha s be e n r e por t e d t o va r y w i de l y ( H ym a n e t a l 1990; W i gr e n & H e i m a nn, 2001) P a r t 2 of t he s ur ve y r e que s t e d t ha t r e s ponde nt s us e a num e r i c s c a l e t o de s c r i be bot h t he l e ve l of phys i c a l i nj ur y ( 1 3 1 = S I B pr oduc e d l os s of s e ns or y or m ot o r f unc t i on, 3 = S I B pr oduc e d no pe r m a ne nt da m a ge ) a nd t he m e di c a l c a r e r e qui r e m e nt s ( 1 3, 1 = S I B r e qui r e d hos pi t a l i z a t i on or s ur ge r y, 3 = S I B di d not r e qui r e c a r e o f m e di c a l p r of e s s i ona l ) a s s oc i a t e d w i t h t he t opogr a phi e s of S I B a s ubj e c t w a s r e por t e d t o e xhi bi t F i na l l y, P a r t 3 r e que s t e d i nf or m a t i on a bout c ur r e nt t r e a t m e nt i f a ny, f o r S I B i n t e r m s of pr e s c r i be d m e di c a t i on f or S I B us e o f phys i c a l r e s t r a i nt s o r pr o t e c t i ve e qu i pm e nt m e di c a l t r e a t m e nt ( e g. w ound c a r e

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16 by nur s e ) f o r S I B a nd f or m a l be ha vi or m a na ge m e nt pr ogr a m s s pe c i f i c a l l y de s i gne d t o r e duc e S I B A c opy o f t he s ur ve y i s pr ov i de d i n A ppe ndi x A R e s u l t s an d D i s c u s s i on S e l f i nj ur i ous be ha vi o r w a s r e por t e d t o oc c ur i n 11 7 of t he 203 s ubj e c t s s ur ve ye d, i ndi c a t i ng a n S I B pr e va l e nc e of 58 % i n t hi s s a m pl e of i ndi vi dua l s w i t h P W S T he a ve r a ge a ge of s ubj e c t s e xhi bi t i ng S I B w a s 29 ye a r s ( r a ngi ng f r om 11 ye a r s t o 56 ye a r s ) T a bl e 2 2 s how s t he r e s ul t s of t he pr e va l e nc e f i ndi ngs f or t opog r a phy, f r e que nc y, i nj ur y s e ve r i t y, a nd m e di c a l c a r e r e qui r e m e nt s T he m os t c om m on t opogr a phy o f S I B w a s s ki n pi c ki ng, r e por t e d t o oc c ur i n 75% o f t he s a m pl e T he a ve r a ge f r e que nc y l e ve l o f s ki n pi c ki ng w a s 3 ( oc c ur s a t l e a s t onc e a w e e k but not da i l y ) t he m o da l s e ve r i t y l e ve l w a s 3 ( ha s pr oduc e d no pe r m a ne nt da m a ge ) a nd t he m oda l m e di c a l c a r e l e ve l w a s 3 ( ha s not r e qui r e d a ny c a r e by a m e di c a l pr of e s s i ona l ) O t he r t opogr a phi e s o f S I B w e r e r e por t e d t o oc c ur m uc h l e s s f r e que nt l y. O f t he 22 pos s i bl e s e l f i nj ur i ous be ha vi or t opogr a p hi e s on t he s ur ve y, ove r ha l f w e r e r e por t e d t o oc c ur i n l e s s t ha n 10% of t he s a m pl e T he s e f i ndi ngs a r e unus ua l i n s e ve r a l r e s pe c t s T h e ove r a l l di s t r i but i on of S I B t opogr a phi e s r e por t e d i n t hi s P W S s a m pl e i s ve r y di f f e r e nt t ha n t ha t r e por t e d i n t he D D popul a t i on a s a w hol e T a bl e 2 3 s how s t he p r e va l e nc e f or s e ve r a l S I B t opogr a phi e s i n t he c ur r e nt s t udy w i t h i ndi vi dua l s w i t h P W S a s c om pa r e d t o t he pr e va l e nc e f i ndi ngs o f s e ve r a l ot he r s t udi e s w i t h i ndi vi dua l s w i t h D D A m uc h hi ghe r pr e va l e nc e of s ki n pi c ki ng, or i f i c e di ggi ng, a nd r um i na t i on w a s o bs e r ve d i n t he P W S r e l a t i ve t o t he D D popul a t i on w hi c h a ve r a ge d 22% 10 % a nd 10% r e s pe c t i ve l y. O n t he ot he r ha nd t he p r e va l e nc e of he a d h i t t i ng, bi t i n g, a nd he a d ba ngi ng w a s r e por t e d t o be m uc h hi ghe r i n t he D D popul a t i on w hi c h a ve r a ge d 45% 39% a nd 20% r e s pe c t i ve l y. H ow e ve r a l l of

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17 t he s e t opogr a phi e s w e r e r e por t e d i n 17% or l e s s of t hi s P W S popu l a t i on. N e ve r t he l e s s t he da t a i ndi c a t e t ha t i ndi vi dua l s w i t h P W S e nga ge i n a w i de r a nge of S I B i n a ddi t i on t o t he c om m onl y r e por t e d s ki n pi c ki ng t opogr a p hy. A l t hough s ki n pi c ki ng w a s a s s oc i a t e d w i t h t he hi g he s t pr e va l e nc e i t w a s not r e por t e d t o be f r e que nt or s e ve r e f or t he m os t pa r t T ha t i s s ki n pi c ki ng i n t hi s s a m pl e oc c ur r e d i nf r e que nt l y a nd w a s not s e ve r e i n t e r m s of i nj ur y or m e di c a l c a r e r e qui r e m e nt s H ow e ve r t he r e w e r e r e por t s of m or e f r e que nt s e ve r e s ki n pi c ki ng F i gur e 2 1 de pi c t s f r e que nc y pl ot s of t he s ur ve y r e s ul t s f or s ki n pi c ki ng i n t e r m s of f r e que nc y ( t op pa ne l ) i nj ur y s e ve r i t y ( m i ddl e pa ne l ) a nd m e di c a l c a r e r e qui r e m e nt s ( bot t om pa ne l ) F i na l l y, r e s ul t s of P a r t 3 of t he s ur ve y i ndi c a t e d t h a t t he m os t c om m on t r e a t m e nt f or S I B i n P W S w a s s om e t ype of f or m a l be ha vi or i nt e r ve nt i on pr ogr a m T a bl e 2 4 l i s t s t he f r e que nc y of r e por t e d t r e a t m e nt s f or S I B T he s e f i ndi ngs a r e c o ns i s t e nt w i t h pr e vi ous r e por t s t ha t t r e a t m e nt of S I B i n t he D D popul a t i on t ypi c a l l y i nvo l ve s ope r a nt c ondi t i oni ng ( I w a t a e t a l 1994) a l t hough i t i s not e d t ha t ve r y f e w r e s ponde nt s r e por t e d de t a i l s r e ga r di ng be ha vi or pr ogr a m c om pone nt s or r e l a t i ve e f f e c t i ve ne s s S t udy 1 i de nt i f i e d a r e l a t i ve l y hi gh pr e va l e nc e of S I B i n P W S ( 58% ) A ddi t i ona l l y, r e s ul t s i ndi c a t e d t ha t i ndi vi dua l s w i t h P W S e nga ge i n a n um be r of t opogr a phi e s of S I B ( m os t not a bl y s ki n pi c ki ng) H ow e ve r t he de t e r m i na nt s of S I B i n t hi s popul a t i on r e m a i n unc l e a r be c a us e a t t e m pt s t o i de nt i f y t he f unc t i ona l c ha r a c t e r i s t i c s i n S I B a r e e s s e nt i a l l y none xi s t e nt W i gr e n a nd H e i m a nn ( 2001) i nc l ude d i n t he i r s ur ve y que s t i ons s ol i c i t i ng pa r e nt a l op i ni on a bout s i t ua t i ons i n w hi c h S I B w a s t ypi c a l l y di s pl a ye d. H ow e ve r n o e xpe r i m e nt a l a na l ys i s of va r i a bl e s t ha t m i ght i nf l ue nc e S I B ha s be e n r e por t e d i n t he P W S l i t e r a t ur e T he r e f o r e t he pur pos e o f S t udy 2 w a s t o

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18 c onduc t f unc t i ona l a na l ys e s w i t h a s ubs e t of i ndi vi dua l s f r om S t udy 1 t o i de nt i f y e nvi r on m e nt a l de t e r m i na nt s of S I B i n i ndi vi dua l s w i t h P W S

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19 T a bl e 2 1. D e m og r a phi c c ha r a c t e r i s t i c s of s ubj e c t s a m pl e C ha r a c t e r i s t i c N um be r of s ubj e c t s P e r c e nt of s a m pl e G e nde r M a l e 89 44% F e m a l e 112 55% L e ve l of f unc t i oni ng M i l d/ m ode r a t e M R 168 83% S e ve r e M R 7 3% P r of ou nd M R 1 1% U nknow n 27 13% S e ns or y i m pa i r m e nt s H e a r i ng de f i c i t 6 3% V i s i on de f i c i t 57 28% T ype of P W S P a t e r na l D e l e t i on 38 19% U P D 21 10% I m pr i nt i ng de f e c t 2 1% P W S L i ke 15 7% T r a ns l oc a t i on 2 1% U nknow n 101 50% M a l a da pt i ve B e ha vi or H oa r di n g 91 45% S t e a l i ng 161 79% T a nt r um s 159 78% A ggr e s s i ve be ha vi or 112 55% D i s r upt i ve be ha vi or 108 53% N onc om pl i a nc e 122 60% S t e r e ot ypy 47 23% S I B 117 58%

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20 T a bl e 2 2. F r e que nc y a nd pe r c e nt of S I B t opog r a p hy, f r e que nc y, s e ve r i t y, a nd m e di c a l c a r e T opogr a phy N um be r of s ubj e c t s P e r c e nt F r e que nc y ( A ve r a ge ) S e ve r i t y ( M ode ) M e di c a l C a r e ( M ode ) S ki n pi c ki ng 88 75% 3 3 3 O r i f i c e di ggi ng 33 28% 3 3 3 B i t i ng 20 17% 4 3 3 H a i r pul l i ng 18 15% 4 3 3 B ody ba ngi ng 16 14% 5 3 2 B ody hi t t i ng 15 13% 4 3 2 B r uxi s m 15 13% 3 3 2 R um i na t i on 15 13% 3 3 3 H e a d ba ngi ng 14 12% 4 3 3 P ol ydi ps i a 10 11% 4 3 3 P i c a 12 10% 4 3 3 H e a d hi t t i ng 11 9% 4 3 3 N a i l pul l i ng 10 9% 4 3 3 A e r opha gi a 7 6% 4 3 3 C ut t i ng 7 6% 5 3 1 C hoki ng 6 5% 5 3 3 E ye poki ng 6 5% 4 3 3 N e c k w hi ppi ng 6 5% 4 3 3 T e e t h pul l i ng 6 5% 5 3 2 V om i t i ng 6 5% 4 3 3 H a nd m out hi ng 5 4% 5 3 3 O t he r 5 4% 4 3 3 T hr oa t gougi ng 4 3% 5 3 3

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21 T a bl e 2 3. C om pa r i s ons of S I B pr e va l e nc e f i ndi n gs by t opogr a phy T opogr a phy N e i de r t ( C ur r e nt ) N = 117 G r i f f i n ( 1986) N = 184 E m be r s on ( 1990) N = 163 R oj a hn ( 1984) N = 60 S ki n pi c ki ng/ s c r a t c hi ng 75% 26% 16% 25% O r i f i c e di ggi ng 28% 10% N ot r e por t e d < 10% B i t i ng 17% 39% 37% 40% R um i na t i on 13% < 10% N ot r e por t e d < 10% H e a d ba ngi ng 12% 29% < 10% N ot r e por t e d H e a d hi t t i ng 9% 37% 29% 70% T a bl e 2 4. F r e que nc y a nd pe r c e nt of r e por t e d t r e a t m e nt f or S I B T r e a t m e nt N um be r of s ubj e c t s P e r c e nt M e di c a l i nt e r ve nt i on 35 30% P hys i c a l r e s t r a i nt or pr ot e c t i ve e qui pm e nt 15 13% M e di c a l c a r e 40 34% F or m a l be ha vi or pr ogr a m 76 6 5%

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22 F i gur e 2 1 F r e que nc y pl o t s of s ki n pi c ki ng f r e que nc y, i nj ur y s e ve r i t y, a nd m e di c a l c a r e r e qui r e m e nt s

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23 C H A P T E R 3 S T U D Y 2: P R E V A L E N C E O F F U N C T I O N S O F S E L F I N J U R I O U S B E H A V I O R I N T H E P R A D E R W I L L I S Y N D R O M E M e t h od S u b j e c t s a n d S e t t i n gs S ubj e c t s w e r e 25 i ndi vi dua l s w i t h P W S w ho l i ve d a nd w or ke d a t a l oc a l a dul t pr ogr a m f or i ndi vi dua l s w i t h de ve l opm e nt a l di s a bi l i t i e s T he s e s ubj e c t s w e r e r e por t e d by s t a f f t o ha ve a hi s t or y of e nga gi ng i n S I B A ddi t i ona l l y a l l s ubj e c t s be ha vi or i nt e r ve nt i on pl a ns a t t he pr ogr a m i nc l ude d S I B a s a t a r ge t pr obl e m be ha vi or S e s s i ons w e r e c onduc t e d a t t he da y pr ogr a m i n t he r a py r oom s c ont a i ni ng t a bl e s c ha i r s a nd s e s s i on m a t e r i a l s r e l e va nt t o t he s pe c i f i c a s s e s s m e nt c ondi t i ons S e s s i ons l a s t e d 10 m i n a nd w e r e c ondu c t e d t hr e e t o f i ve t i m e s pe r da y, 4 t o 5 da ys pe r w e e k. S e l f I n j u r y T r au m a ( S I T ) S c al e T he S e l f I nj ur y T r a um a ( S I T ) S c a l e i s a r a t i ng s c a l e f or c ol l e c t i ng da t a on s ur f a c e t i s s ue da m a ge c a us e d by S I B ( I w a t a P a c e K i s s e l N a u, & F a r be r 1990) T he s c a l e c l a s s i f i e s a nd qua nt i f i e s t i s s ue da m a ge a c c or di ng t o t opog r a phy, l oc a t i on of t he i nj ur y on t he body, t ype o f i nj ur y, a nd num be r of i nj ur i e s A c opy of t he S I T S c a l e i s pr ovi de d i n A ppe ndi x B T he S I T S c a l e w a s c onduc t e d f or t w o r e a s ons F i r s t t he i n f or m a t i on a l l ow e d i de nt i f i c a t i on o f a gi ve n i ndi vi dua l s s pe c i f i c t opogr a phi e s of S I B S e c ond, t he S I T S c a l e pr ovi de d a n ove r a l l r i s k e s t i m a t e s uc h t ha t a ppr opr i a t e s a f e t y p r e c a ut i ons c oul d be t a ke n du r i ng t he c our s e of t he f unc t i ona l a na l ys i s P r i or t o t he s t a r t o f a s ubj e c t s f unc t i ona l a na l ys i s t w o be ha vi or a na l ys t s a dm i ni s t e r e d t he S I T S c a l e F i r s t t he t opog r a phi c a s pe c t s of S I B w e r e i de nt i f i e d vi a r e c or d r e vi e w of t he s ubj e c t s be ha vi or i nt e r ve nt i on pl a n I n a ddi t i on, phys i c a l e vi de nc e of he a l e d i nj ur i e s ( e g s c a r s pe r m a ne nt di s f i gu r e m e nt e t c ) w a s doc um e nt e d. S e c ond, c ur r e nt i nj ur i e s

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24 w e r e obs e r ve d a nd r e c or de d. F or e a c h a r e a of t he body c ont a i ni ng a c ur r e nt ( unhe a l e d) i nj u r y, obs e r ve r s us e d a s c a l e ( 1, 2 or 3) t o r e c or d t he nu m be r of w ounds a t t ha t pa r t i c ul a r l oc a t i on. O bs e r ve r s t he n not e d t he t ype a nd s e ve r i t y of t he m os t s e ve r e w ound a t t ha t l oc a t i on, i de nt i f i e d t he w ound a s e i t he r a n a br a s i on/ l a c e r a t i on or a c on t us i on, a nd us e d a num e r i c s c a l e ( 1, 2, or 3) t o i ndi c a t e w ound s e ve r i t y. F i na l l y, t he i n f or m a t i on w a s s um m a r i z e d t o pr ovi de a n ove r a l l r i s k e s t i m a t e F or e xa m pl e a h i gh ove r a l l r i s k e s t i m a t e w hi c h c ons i s t e d of a n e xt e ns i ve a br a s i on o r de e p l a c e r a t i on, a c ont us i on r e s ul t i ng i n t i s s ue r upt ur e o r e xt e ns i ve s w e l l i ng on t he he a d, w oul d l i ke l y r e qui r e i m m e di a t e m e di c a l a t t e nt i on a nd s ub s e que nt pr e ve nt i on of t he be ha vi or s uc h t ha t s a f e l y a l l ow i ng t he be ha vi or t o oc c ur dur i ng t he f u nc t i ona l a na l ys i s w oul d be di f f i c ul t F o r i ndi vi dua l s w i t h a hi gh r i s k e s t i m a t e f unc t i ona l a na l ys i s s e s s i ons w e r e c onduc t e d onl y dur i ng t i m e s i n w hi c h a nu r s e w a s a va i l a bl e A ddi t i ona l l y s e s s i ons w e r e t e r m i na t e d ( a nd t he nur s e w a s not i f i e d) i f t he r e s pons e pr oduc e d vi s i bl e i nj u r y ( e g. bl ood, r e dne s s s w e l l i ng) C onve r s e l y, a l ow t o m ode r a t e ove r a l l r i s k e s t i m a t e w oul d l i ke l y r e qui r e m e di c a l a t t e nt i on a s ne e de d ( e g a dm i ni s t r a t i on of m i nor f i r s t a i d pr oc e dur e s by e i t h e r t he be ha vi or a na l ys t or nu r s i ng s t a f f m e m be r f ol l ow i ng a bl oc k of s e s s i ons ) but c oul d be a l l ow e d t o oc c ur dur i ng t he f unc t i ona l a na l ys i s w i t hout r e s ul t i ng i n m o r e s e r i ous t r a um a T he a ge f unc t i oni ng l e ve l t a r ge t e d t opogr a phi e s o f S I B a nd ove r a l l r i s k e s t i m a t e ( a s de t e r m i ne d by t he S I T s c a l e ) f o r e a c h s ubj e c t i s r e por t e d i n T a bl e 3 1 R e s p on s e M e as u r e m e n t an d R e l i ab i l i t y T a r ge t be ha vi or s w e r e s e l e c t e d f or s ubj e c t s on a n i ndi vi dua l ba s i s a nd a r e l i s t e d i n T a bl e 3 1. S ki n pi c ki ng w a s de f i ne d a s a ny na i l t o s ki n c o nt a c t pr oduc i ng vi s ua l di s pl a c e m e nt of t he s ki n or t ouc hi ng e xi s t i ng w ounds H a i r pu l l i ng w a s de f i ne d a s us i ng ha nds t o f o r c i bl y pul l or r e m ove ha i r f r om t he he a d. B i t i ng w a s de f i ne d a s i ns e r t i on of a body pa r t i n t he m out h s uc h t ha t

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25 t he uppe r a nd l ow e r t e e t h m a de c ont a c t w i t h t he s ki n a t t ha t l oc a t i on. R e c t a l di ggi ng w a s de f i ne d a s i ns e r t i on of t he s ubj e c t s ha nds i ns i de t he i r p a nt s pa s t t he e l bow F or a l l s ubj e c t s s ki n p i c ki ng w a s t he m os t c om m onl y obs e r ve d t opog r a phy; ha i r pul l i ng bi t i ng, a nd r e c t a l di ggi ng w e r e r a r e l y obs e r ve d. T he r e f or e da t a a r e r e por t e d a s a c om bi ne d m e a s ur e of S I B T r a i ne d gr a dua t e a nd unde r gr a dua t e s t ude nt s c ol l e c t e d da t a on t he oc c ur r e nc e of S I B ( a s de f i ne d f or e a c h s ubj e c t ) on ha ndhe l d pe r s ona l di gi t a l a s s i s t a nt s ( P D A s ) F r e q ue nc y da t a c ol l e c t i on w a s us e d f or s ubj e c t s w hos e S I B ha d a di s c r e t e ons e t a nd o f f s e t I n t e r va l da t a c ol l e c t i on w a s us e d f o r s ubj e c t s w hos e S I B oc c ur r e d a t e xt r e m e l y h i gh r a t e s o r oc c ur r e d f or e xt e nde d pe r i ods o f t i m e D a t a w e r e c onve r t e d t o e i t he r num be r of r e s pons e s pe r m i nut e ( r pm ) or pe r c e nt a ge of i nt e r va l s oc c ur r e nc e of S I B f or pur pos e s of da t a a na l ys i s I nt e r obs e r ve r a gr e e m e nt w a s a s s e s s e d dur i ng a n a ve r a ge of 42% of s e s s i ons f or a l l s ubj e c t s by ha vi ng a s e c ond obs e r ve r s i m ul t a ne ous l y but i n de pe nde nt l y c ol l e c t da t a w i t h t he pr i m a r y obs e r ve r S e s s i ons w e r e di vi de d i nt o 10 s i nt e r va l s a nd da t a w e r e c om pa r e d on a n i nt e r v a l by i nt e r va l ba s i s A g r e e m e nt c oe f f i c i e nt s w e r e c a l c ul a t e d by di vi di ng t he s m a l l e r nu m be r o f r e s pons e s i n e a c h i nt e r va l by t he l a r ge r num be r of r e s pons e s ; t he s e f r a c t i ons w e r e a ve r a ge d a c r os s i nt e r va l s a nd m ul t i pl i e d by 100% M e a n a gr e e m e nt s c or e s f or S I B w e r e a bove 90 % f or a l l s ubj e c t s P r oc e d u r e s A f unc t i ona l a na l ys i s ( I w a t a e t a l 1982 / 1994) w a s c onduc e d f or e a c h s ubj e c t t o i de nt i f y t he c ons e que nc e s t ha t m a i nt a i ne d S I B T h r e e t e s t c ondi t i ons ( a l one a t t e nt i on a nd de m a nd) a nd a c ont r ol c ondi t i on ( a ga i ns t w hi c h l e ve l s of S I B i n t he t e s t c ondi t i ons w e r e c om pa r e d) a l t e r na t e d i n a m ul t i e l e m e nt de s i gn. T he c ondi t i ons of t he a n a l ys i s w e r e pr e s e nt e d i n a f i xe d s e que nc e ( a l one a t t e nt i on pl a y de m a nd) t o a r r a nge a s t r ong e s t a bl i s hi ng ope r a t i on f o r t he r e i nf or c e r i n a

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26 gi ve n c ondi t i on by pr e c e di ng t ha t c ondi t i on w i t h a c ondi t i on i n w hi c h t he r e i n f or c e r w a s a bs e nt ( de pr i va t i on) D ur i ng t he a l one c ondi t i on, t he s ubj e c t w a s a l one i n a n ot he r w i s e ba r r e n r oom ( i e no m a t e r i a l s w e r e pr e s e nt ) N o pr ogr a m m e d c ons e que nc e s w e r e a r r a nge d f or oc c ur r e nc e s of S I B T he pur pos e of t he a l one c ondi t i on w a s t o de t e r m i ne i f S I B w a s m a i nt a i ne d by a ut om a t i c r e i nf or c e m e nt ( i e t he be ha vi or pe r s i s t e d i n t he a b s e nc e of s oc i a l c ont i nge nc i e s ) D ur i ng t he a t t e nt i on c ondi t i on t he s ubj e c t a nd a t h e r a pi s t w e r e i n a r oom T he t he r a pi s t a s ke d t he s ubj e c t t o pl a y i nde pe nde nt l y w i t h m a t e r i a l s t he n i gnor e d t he s ubj e c t e xc e pt t o de l i ve r a t t e nt i on ( i e br i e f phys i c a l i nt e r r upt i on o f t he r e s pons e ve r ba l r e pr i m a nd, a nd s t a t e m e nt of c onc e r n) f ol l ow i ng oc c ur r e nc e s of S I B T he pu r po s e of t he a t t e nt i on c ondi t i on w a s t o de t e r m i ne i f S I B w a s m a i nt a i ne d by s oc i a l pos i t i ve r e i nf or c e m e nt ( a c c e s s t o a t t e nt i on) D ur i ng t he de m a nd c ondi t i on, a t he r a pi s t p r e s e nt e d a c a de m i c ( e g. m a t h pr obl e m s r e a di ng c om pr e he ns i on que s t i ons s pe l l i ng t a s ks e t c ) voc a t i ona l ( e g. a s s e m bl y t a s ks c l e a ni ng t a s ks e t c ) or hyg i e ni c ( e g br us h ha i r r ub l ot i on on ha nds e t c ) t a s ks t o t he s ubj e c t us i ng a t hr e e s t e p pr om pt i ng s e que nc e ( ve r ba l ge s t ur a l p hys i c a l pr om pt s ) C om pl i a nc e w i t h t he t a s k r e s ul t e d i n ve r ba l p r a i s e ; S I B r e s ul t e d i n a 30 s br e a k f r om t he t a s k. T he pur pos e of t he de m a nd c ondi t i on w a s t o de t e r m i ne i f S I B w a s m a i nt a i ne d by s oc i a l ne ga t i ve r e i nf o r c e m e nt ( e s c a pe f r om de m a nds ) D ur i ng t he c ont r ol ( pl a y) c ondi t i on a t he r a pi s t a nd t he s ubj e c t w e r e i n a r oo m N o t a s k de m a nds w e r e pr e s e nt e d, a nd pr e f e r r e d t oys a nd a t t e nt i on w e r e c ont i nuous l y a va i l a bl e N o pr ogr a m m e d c ons e que nc e s w e r e a r r a nge d f or S I B T he pur pos e of t he pl a y c ondi t i on w a s t o s e r ve a s t he c ont r ol c ondi t i on a ga i ns t w hi c h t he t e s t c ondi t i ons w e r e c om pa r e d.

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27 W he ne ve r pos s i bl e s pe c i f i c s t i m ul i i nc l ud i ng t he r a pi s t s c ol or e d s hi r t s a nd s e s s i on r oom s w e r e c o r r e l a t e d w i t h t he di f f e r e nt f unc t i ona l a na l ys i s c ondi t i ons t o f a c i l i t a t e di s c r i m i na t i on. A ddi t i ona l l y a l one s e s s i ons w e r e c onduc t e d i n a r oom e qui ppe d w i t h a hi dde n c a m e r a A hi dde n c a m e r a w a s us e d i n f a vor o f t he m or e t r a di t i ona l one w a y m i r r or be c a us e of t he pa t t e r n of be ha vi or di s pl a ye d by one o f t he f i r s t i ndi vi dua l s f o r w hom a f unc t i ona l a na l ys i s w a s c onduc t e d ( S ubj e c t P M ) F i gur e 3 1 s how s t h e r e s ul t s of t hi s S ubj e c t P M s f unc t i ona l a na l ys i s T he t op pa ne l s how s f r e que nc y o f S I B d ur i ng s e ve r a l a l one s e s s i ons T he bot t om pa ne l s how s c um ul a t i ve f r e que nc i e s of S I B dur i ng t hos e s e s s i ons T he f i r s t a l one s e s s i on c onduc t e d w i t h S ubj e c t P M w a s c onduc t e d i n a r o om e qui ppe d w i t h a one w a y m i r r or ( R oom A 1) A t ot a l of 19 oc c ur r e nc e s of S I B w e r e obs e r v e d dur i ng t h i s s e s s i on. H ow e ve r t he c um ul a t i ve gr a ph s how s t ha t S I B oc c u r r e d a t a hi g h r a t e dur i ng t hi s s e s s i on i n R oom A 1 unt i l a ppr oxi m a t e l y m i nut e 2 a t w hi c h poi nt t he be ha vi or s t oppe d oc c ur r i ng f or t he r e m a i nde r o f t he s e s s i on. S ubs e que nt l y, a l one s e s s i ons w e r e c onduc t e d i n a di f f e r e nt r oom R oom B a l s o e qui ppe d w i t h a o ne w a y m i r r o r T he s a m e pa t t e r n of r e s pondi ng w a s obs e r ve d. T ha t i s a r e l a t i ve l y hi gh f r e que nc y of S I B w a s obs e r ve d; how e ve r t he w i t h i n s e s s i on pa t t e r n of r e s pondi ng s how s t ha t a l l be ha vi or oc c ur r e d w i t hi n t he f i r s t t hr e e m i nut e s of s e s s i on. T o c ont r o l f or t he pos s i bi l i t y t ha t t he s ubj e c t ha d de t e c t e d t he pr e s e nc e of t he obs e r ve r be hi nd t he one w a y m i r r or s e s s i ons w e r e s ubs e que nt l y c onduc t e d i n a r oom e qui ppe d w i t h a c a m e r a hi d de n i ns i de a nonf unc t i ona l s m oke de t e c t or T he t op pa ne l s how s a m ode r a t e f r e que nc y o f S I B dur i ng t he f i r s t s e s s i on c onduc t e d i n t hi s r oom ( R oom C ) W i t hi n s e s s i on da t a a na l ys i s s how e d t ha t r e s pondi ng c ont i nue d t o oc c ur t hr oughout t hi s s e s s i on a nd c ont i nue d t o oc c ur dur i ng a l l s ubs e que nt a l one s e s s i ons c onduc t e d i n t hi s r oom F i na l l y, a n a ddi t i ona l s e s s i on w a s c onduc t e d i n t he or i gi na l s e s s i on r oom ( R oom A 2) f ol l ow i ng c om pl e t i on of t he f unc t i ona l a na l ys i s i n w hi c h a l one s e s s i ons

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28 w e r e a l w a ys c onduc t e d i n t he hi dde n c a m e r a r oom A n i m m e di a t e e l i m i na t i on o f S I B w a s obs e r ve d t ha t m a i nt a i ne d t hr oughou t t he s e s s i on. F ur t he r z e r o l e ve l s o f S I B m a i nt a i ne d du r i ng f our a ddi t i ona l s e s s i ons ( da t a not s how n) G i ve n t he s e f i ndi ngs t he hi dde n c a m e r a r oom w a s us e d a s t he s e t t i ng f or a l one s e s s i ons c onduc t e d w i t h a l l s ubs e que nt s ubj e c t s F u nc t i ona l a na l ys e s w e r e c ons i de r e d c om pl e t e w he n di f f e r e nt i a l r e s pondi ng w a s obs e r ve d a f t e r a t l e a s t 3 c om pl e t e s e t s of c ondi t i ons or f ol l o w i ng t he c om pl e t i on of 5 s e t s of c ondi t i ons H i ghe r l e ve l s of S I B i n a ny of t he t e s t c ondi t i ons r e l a t i ve t o t he c ont r ol c ondi t i on s ugge s t e d t he r e i nf or c e r r e s pons i bl e f or be ha vi o r a l m a i nt e na nc e R e s u l t s an d D i s c u s s i on T hr e e ge ne r a l pa t t e r ns of r e s pondi ng f or t he c u r r e n t s ubj e c t s w e r e obs e r ve d. F i r s t f our s ubj e c t s s how e d S I B m a i nt a i ne d by s oc i a l pos i t i ve r e i nf or c e m e nt T he s e s ubj e c t s di s pl a ye d hi ghe r l e ve l s of S I B i n t he a t t e nt i on c ondi t i on i n w hi c h S I B pr oduc e d a t t e nt i on f r om a not he r pe r s on, r e l a t i ve t o a l l ot he r c ondi t i ons F i gur e 3 2 s how s t he r e s ul t s of t he f u nc t i ona l a na l ys e s f or t he s e f ou r s ubj e c t s ( J C P P A B T H ) S ub j e c t J C ( t op l e f t pa ne l ) di d not e xhi bi t S I B i n a ny c ondi t i on unt i l s e s s i on 10 ( a t t e nt i on) S ubs e que nt l y, J C e xhi bi t e d c ons i s t e nt l y hi ghe r l e ve l s of S I B i n t he a t t e nt i on c ondi t i on a s c om pa r e d t o t he o t he r c ondi t i ons A s i m i l a r pa t t e r n of r e s po ndi ng w a s obs e r ve d f or s ubj e c t P P ( t op r i ght pa ne l ) I ni t i a l l y a c l e a r f unc t i on w a s not i de nt i f i e d dur i ng t he m u l t i e l e m e nt f unc t i ona l a na l y s i s f or s ubj e c t s A B a nd T H ( bot t om l e f t pa ne l a nd bot t om r i ght pa ne l r e s pe c t i ve l y) B ot h s ubj e c t s e nga ge d i n S I B t o s om e e xt e nt i n bot h t he a t t e nt i on a nd de m a nd c ondi t i ons ; how e ve r l e ve l s of S I B w e r e not c ons i s t e nt l y hi ghe r i n t he s e c ondi t i ons a c r os s s e s s i ons a nd S I B de c r e a s e d t o n e a r z e r o l e ve l s dur i ng t he f i na l s e s s i ons of t he m ul t i e l e m e nt c om pa r i s on. S ubs e que nt l y, a pa i r w i s e c om pa r i s on ( I w a t a D unc a n, Z a r c one L e r m a n, & S hor e 1994 ) w a s us e d t o c l a r i f y t he f u nc t i on of S I B f o r t he s e t w o pa r t i c i pa nt s T he

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29 pa i r w i s e de s i gn c ons i s t e d of s e ve r a l pha s e s i n w hi c h t he i nde pe nde nt va r i a bl e w a s i m p l e m e nt e d i n a s e que nt i a l ( A B C ) f a s hi on, a s i n t he r e ve r s a l r e s e a r c h de s i gn. H ow e ve r e a c h pha s e c ons i s t e d of bot h a t e s t a nd a c ont r ol a l t e r na t e d i n a m ul t i e l e m e nt f o r m a t D u r i ng t he pa i r w i s e c om pa r i s on, s ubj e c t A B a nd s ubj e c t T H di s pl a ye d c ons i s t e nt l y hi ghe r l e ve l s of S I B d ur i ng t he a t t e nt i on c ondi t i on r e l a t i ve t o t he c ont r ol c ondi t i on F ur t he r e qua l l y l ow l e ve l s of S I B w e r e obs e r ve d i n t he de m a nd a nd c ont r ol c ondi t i ons f or bot h s ubj e c t s s ugge s t i ng S I B w a s not m a i nt a i ne d by s oc i a l ne ga t i ve r e i n f or c e m e nt S i x s ubj e c t s e nga ge d i n S I B t o s om e e xt e nt i n m o r e t ha n one f unc t i ona l a na l ys i s c ondi t i on. H ow e ve r l e ve l s of S I B w e r e hi ghe r i n t he a l one c ondi t i on r e l a t i ve t o t he ot he r c ondi t i ons T hi s pa t t e r n of r e s pondi ng s ugge s t s t ha t S I B i s m a i n t a i ne d by a ut om a t i c r e i nf or c e m e nt ( i e be ha vi or pe r s i s t s i n t he a bs e nc e of s oc i a l c ons e que nc e s ) F i gur e 3 3 s how s t he r e s ul t s of t he f unc t i ona l a na l ys e s f or t he s e 6 s ubj e c t s ( D P B R C M D H A C a nd P M ) S ubj e c t D P ( t op l e f t pa ne l ) e nga ge d i n S I B a c r os s a l l c ondi t i ons dur i ng t he c o ur s e of t he a na l ys i s S ubj e c t B R ( t op r i ght pa ne l ) i ni t i a l l y e nga ge d i n hi ghe r l e ve l s of S I B du r i ng t he a l one a t t e nt i on, a nd de m a nd c ondi t i ons H ow e ve r S I B de c r e a s e d t o ne a r z e r o unde r bot h t he a t t e nt i on a nd t he de m a nd c ondi t i on ove r t he c our s e of s e s s i ons y e t c ons i s t e n t l y hi gh l e ve l s o f S I B pe r s i s t e d i n t he a l one c ondi t i on. S i m i l a r pa t t e r ns o f r e s pondi ng w e r e ob s e r ve d f or t he ot he r 4 s ubj e c t s ( C M D H A C a nd P M ) T ha t i s S I B oc c ur r e d t o s om e e xt e nt i n m or e t ha n one c ondi t i on i ni t i a l l y, but de c r e a s e d t o n e a r z e r o l e ve l s ove r t he c our s e of t h e a na l ys i s i n a l l c ondi t i ons e xc e pt t he a l one c ondi t i on. F i na l l y, 13 s ubj e c t s e nga ge d i n S I B e i t he r e xc l us i v e l y or a l m os t e xc l us i ve l y i n t he a l one c ondi t i on, a l s o s ugge s t i ng S I B m a i nt a i ne d by a ut o m a t i c r e i nf or c e m e nt F i gur e s 3 4 a nd 3 5 s how t he r e s ul t s of t he f unc t i ona l a na l ys e s f or t he s e 13 s ubj e c t s ( E M K B L K B K D K T M J G

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30 K M A R J B B G J S J L a nd J G ) S ubj e c t s E M a nd K B L ( t op l e f t a nd t op r i ght pa ne l s of F i gur e 3 4, r e s pe c t i ve l y) di s pl a ye d va r i a bl e l e ve l s of S I B H ow e ve r w he n S I B di d oc c ur i t w a s obs e r ve d a l m os t e xc l us i ve l y ( i e w i t h t he e xc e pt i on of a f e w i ns t a nc e s i n one o t he r c ondi t i on ) i n t he a l one c ondi t i on. T he ot he r s ubj e c t s di s pl a ye d hi gh c ons i s t e nt l e ve l s of S I B i n t he a l one c ondi t i on, f o r t he m o s t pa r t t o t he e xc l us i on of a l l ot he r c ondi t i ons F unc t i ona l a na l ys i s r e s ul t s w e r e unc l e a r f o r t w o s ubj e c t s be ha vi or t he y di d not e nga ge i n S I B ( L T ) or e xhi bi t e d i t s por a di c a l l y ( L N ) dur i ng t he a na l ys i s F i gur e 3 6 s how s t he r e s ul t s of t he f unc t i ona l a na l ys i s f or t he s e 2 s ubj e c t s I n S t udy 2, s our c e s of r e i n f or c e m e nt f or S I B w e r e i de nt i f i e d i n 92% o f c a s e s T ha t i s S I B w a s not obs e r ve d ( or obs e r ve d e xt r e m e l y i n f r e que nt l y) f o r onl y 2 o f t he 25 s ubj e c t s i n t he s t udy. S e l f i nj ur i ous be ha vi o r w a s m a i nt a i ne d by s oc i a l p os i t i ve r e i nf or c e m e nt i n 17% of c a s e s i n w hi c h t he r e i nf o r c e r w a s i de nt i f i e d, w he r e a s S I B w a s m a i nt a i ne d by a ut om a t i c r e i n f or c e m e nt i n t he ove r w he l m i ng m a j o r i t y o f c a s e s ( 83% ) N o c a s e s i n w hi c h S I B w a s m a i nt a i ne d by s oc i a l ne ga t i ve r e i nf or c e m e nt w a s obs e r ve d. T a bl e 3 2 s um m a r i z e s t he di s t r i but i on of be ha vi o r a l f unc t i ons f or S I B f or t he 25 P W S s ubj e c t s i n t he c ur r e nt s t udy, a s w e l l a s t he di s t r i but i on o f f unc t i ons r e por t e d i n f ou r l a r ge s c a l e pr e va l e nc e s t udi e s on S I B i n t he D D popul a t i on. T h e s e ot he r s t udi e s c ove r e d t he e nt i r e f i e l d of de ve l opm e nt a l di s a bi l i t i e s A l t hough i t i s pos s i bl e t ha t i ndi vi dua l s w i t h P W S w e r e i nc l ude d i n t he s t udi e s no i nf o r m a t i on r e ga r di ng i ndi vi dua l s ubj e c t di a gnos e s w a s pr ovi de d. T he f i ndi ngs f or t he P W S popul a t i on i n t he c u r r e nt s t udy a r e c ons i de r a bl y di f f e r e nt f r om t he di s t r i bu t i on of f unc t i ons t ypi c a l l y r e por t e d f or S I B i n t he ge ne r a l D D popul a t i on. T he hi ghe s t pe r c e nt a ge s r e por t e d i n pr e vi ous s t udi e s of S I B i n t he D D popul a t i on w e r e a s s oc i a t e d w i t h s oc i a l r e i nf or c e m e nt a nd t hr e e of t he s t udi e s r e por t e d hi gh pe r c e nt a ge s f or S I B

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31 m a i nt a i ne d by s oc i a l ne ga t i ve r e i n f or c e m e nt S u r p r i s i ngl y, no c a s e s of S I B m a i nt a i ne d by s oc i a l ne ga t i ve r e i nf or c e m e nt w e r e i de nt i f i e d i n t he c ur r e nt P W S popul a t i on H a nl e y e t a l ( 20 03) a nd K ur t z e t a l ( 2003 ) r e por t e d s oc i a l pos i t i ve r e i nf or c e m e nt a s t he m os t c om m on f unc t i on f or S I B i n t he D D popul a t i on. H ow e ve r onl y a s m a l l pe r c e nt a ge ( 17% ) of t he c a s e s i n t he c ur r e nt s t udy w e r e a s s oc i a t e d w i t h a t t e nt i on m a i nt a i ne d S I B F i na l l y, a l l of t he pr e vi ous s t udi e s r e por t e d S I B i n t he D D popul a t i on t o be m a i nt a i ne d by a ut om a t i c r e i nf or c e m e nt i n a ppr oxi m a t e l y 25% of c a s e s or l e s s H ow e ve r t he ove r w he l m i ng m a j o r i t y of c a s e s i n t he c u r r e nt s t udy ( 83% ) w e r e c a s e s of a ut om a t i c a l l y m a i nt a i ne d S I B

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32 T a bl e 3 1. S ubj e c t c ha r a c t e r i s t i c s S ubj e c t A ge F unc t i oni ng L e ve l S e l f i nj ur y R i s k E s t i m a t e J G 11 M i l d/ M ode r a t e M R s ki n pi c ki ng, ha i r pul l i ng l ow K M 14 M i l d/ M ode r a t e M R s ki n pi c ki ng, bi t i ng, he a d ba ngi ng l ow E M 14 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow J C 16 M i l d/ M ode r a t e M R s ki n pi c ki ng, bi t i ng l ow A C 18 M i l d/ M ode r a t e M R s ki n pi c ki ng, bi t i ng hi gh B G 18 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow L T 18 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow J S 20 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow A B 21 M i l d/ M ode r a t e M R s ki n pi c k i ng, he a d ba ngi ng bi t i ng K B 21 M i l d/ M ode r a t e M R s ki n pi c ki ng, bi t i ng l ow K T 21 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow L N 22 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow M J G 24 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow B R 24 M i l d/ M ode r a t e M R s ki n pi c ki ng, bi t i ng m ode r a t e K D 25 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow T H 26 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow K B L 26 M i l d/ M ode r a t e M R s ki n pi c ki ng, bi t i ng, r e c t a l di ggi ng l ow D H 29 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow J L 29 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow D P 32 M i l d/ M ode r a t e M R s k i n pi c ki ng hi gh J B 33 M i l d/ M ode r a t e M R s ki n pi c ki ng, bi t i ng l ow P M 37 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow A R 38 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow C M 42 M i l d/ M ode r a t e M R s ki n pi c ki ng l ow P P 56 M i l d/ M ode r a t e M R s ki n pi c ki ng, ha i r pul l i ng l ow M R = m e n t a l r e t a r d a t i o n

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33 T a bl e 3 2. D i s t r i but i on o f S I B f unc t i ons i n c ur r e nt P W S popul a t i on c om pa r e d t o D D popul a t i on F unc t i on N e i de r t ( c ur r e nt ) I w a t a e t a l ( 1994) K a hng e t a l ( 2002) H a nl e y e t a l ( 2003) K ur t z e t a l ( 2003) S oc i a l pos i t i ve r e i nf or c e m e nt 17% 26. 3% 26. 4% 39. 2% 37. 9% S oc i a l ne ga t i ve r e i nf or c e m e nt 0% 38. 1% 31. 3% 29. 3% 3. 4% A ut om a t i c r e i nf or c e m e nt 83% 25. 7% 27. 5% 24. 8% 13. 8% U nknow n ( N o S I B ) 8% 9. 9% 7. 9% 5. 5% 37. 9%

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34 F i gur e 3 1 F r e que nc y o f S I B dur i ng f i r s t a l one s e s s i on c onduc t e d i n t hr e e di f f e r e nt s e s s i on r oom s ( t op pa ne l ) C um ul a t i ve f r e que nc y of S I B d ur i ng c ons e c ut i ve 10 s i nt e r va l s o f a l one s e s s i on i n e a c h of t he r oo m s ( bot t om pa ne l )

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35 F i gur e 3 2 P e r c e nt a ge of i nt e r va l s ( s ubj e c t s J C a n d P P ) a nd r e s pons e s p e r m i nut e ( s ubj e c t s A B a nd T H ) a c r os s s e s s i on s a nd e xpe r i m e nt a l c ondi t i o ns f or c a s e s of S I B m a i nt a i ne d by s oc i a l pos i t i ve r e i nf or c e m e nt

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36 F i gur e 3 3 R e s pons e s pe r m i nut e ( s ubj e c t s D P B R a nd P M ) a nd pe r c e nt a ge of i nt e r va l s of S I B ( s ubj e c t s C M D H a nd A C ) a c r os s s e s s i ons a nd e xpe r i m e nt a l c ondi t i ons f o r c a s e s of a ut om a t i c r e i nf or c m e nt

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37 F i gur e 3 4 R e s pons e s pe r m i nut e ( s ubj e c t s K B a nd M J G ) a nd pe r c e nt a ge of i nt e r va l s of S I B ( s ubj e c t s E M K B L K D K T a nd K M ) a c r os s s e s s i ons a nd e xpe r i m e nt a l c ondi t i ons f or c a s e s of S I B m a i nt a i ne d by a ut om a t i c r e i n f or c e m e nt

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38 F i gur e 3 5 R e s pons e s pe r m i nut e ( s ubj e c t s A R a nd J L ) a nd pe r c e nt a ge of i nt e r va l s of S I B ( s ubj e c t s J B G B J S a nd J G ) a c r os s s e s s i ons a nd e xpe r i m e nt a l c ondi t i ons f or c a s e s of S I B m a i nt a i ne d by a ut om a t i c r e i nf o r c e m e nt

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39 F i gur e 3 6 R e s pons e s pe r m i nut e ( s ubj e c t s L T ) a nd pe r c e nt a ge of i n t e r va l s of S I B ( s ubj e c t L N ) a c r os s s e s s i ons a nd e xpe r i m e nt a l c ondi t i ons c a s e s of S I B i n w hi c h s our c e of r e i nf or c e m e nt w a s not i de nt i f i e d.

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40 C H A P T E R 4 G E N E R A L D I S C U S S I O N R e s ul t s of t he pr e s e nt s t udi e s pr ovi de i n f or m a t i on a bout t he di s t r i but i on t opog r a phi c a l f e a t ur e s a nd f unc t i ona l c ha r a c t e r i s t i c s of S I B i n t h e P r a de r W i l l i S yndr o m e T he da t a of f e r a s om e w ha t di f f e r e nt pe r s pe c t i ve on S I B a s a be ha vi or di s or de r a nd m a y be he l pf ul i n t he de ve l opm e nt of bot h c l i ni c a l a nd r e s e a r c h i ni t i a t i v e s S t udy 1 e xa m i ne d t he pr e va l e nc e of S I B a m ong 20 3 i ndi vi dua l s w i t h P W S f r om 28 a ge nc i e s r e gi s t e r e d w i t h t he P W S U S A R e s ul t s s how e d a n S I B p r e va l e nc e of 58% w hi c h i s m uc h hi ghe r t ha n t ha t r e por t e d i n pr e vi ous s t udi e s t ha t s ur ve ye d a l a r ge nu m be r o f i ndi vi dua l s w i t h D D e i t he r a c r os s m ul t i pl e f a c i l i t i e s w i t hi n a s t a t e or a c r os s f a c i l i t i e s f r om m u l t i pl e s t a t e s T he r e s ul t s of s e ve r a l s uc h s t udi e s a r e s how n i n T a bl e 4 1. T he t a r ge t popu l a t i ons i n t he m a j or i t y of t he s e s t udi e s r e pr e s e nt t ot a l t a r ge t popul a t i ons ( i e e xi s t i ng, of t e n a r bi t r a r y, popul a t i ons ) r a t he r t ha n t a r ge t popul a t i ons t ha t r e s ul t e d f r om s a m pl i ng s t r a t e gi e s ( R oj a hn & E s be ns e n, 2002) T he e xc e pt i o n i n t he a bove s t udi e s w a s H i l l a nd B r ui ni nks ( 1984) w ho f i r s t s a m pl e d c e r t a i n c om m uni t y pr ogr a m s a nd publ i c r e s i de nt i a l f a c i l i t i e s a r ound t he U ni t e d S t a t e s a nd t he n i de nt i f i e d c a s e s of S I B T he p r e va l e nc e of S I B e s t i m a t e i n t he c ur r e nt s t udy i s hi ghe r t ha n t he e s t i m a t e s i n s t udi e s i n t he a bove t a bl e de s pi t e s i m i l a r m e t hods us e d t o i de nt i f y t a r ge t popul a t i on H ow e ve r t he t o t a l num be r o f s ur ve ye d i ndi v i dua l s i n t he s e s t udi e s i s c ons i de r a bl y hi ghe r t ha n t he num be r o f s ur ve ye d i ndi vi dua l s i n t he c ur r e nt s t udy. A ddi t i ona l l y, a l t hough t he popul a t i on i n t he c ur r e n t s t udy c ons i s t e d of i ndi vi dua l s f r om di f f e r e nt a ge nc i e s a c r os s di f f e r e nt s t a t e s one m i ght c ons i de r a l l o f t he s e a ge nc i e s t o be s e gr e ga t e d f a c i l i t i e s c ont a i ni ng a r e l a t i ve l y hom oge ne ous pop ul a t i on of i ndi vi dua l s ( i e i ndi vi dua l s w i t h P W S ) A nu m be r o f pr e va l e nc e s t udi e s t ha t s ur ve ye d a s m a l l e r num be r of i ndi vi dua l s a t a s i ngl e

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41 ( s e gr e ga t e d) f a c i l i t y ha ve r e por t e d h i ghe r S I B pr e v a l e nc e e s t i m a t e s t ha n t he s t udi e s pr e vi ous l y m e nt i one d. T a bl e 4 2 s ho w s t he r e s ul t s of s e ve r a l of s uc h s t udi e s T he r a nge o f S I B pr e va l e nc e e s t i m a t e s i n t he s e s t udi e s ( 31% t o 65. 9% ) i s m or e c ons i s t e nt w i t h t he S I B pr e va l e nc e f i ndi ng i n t he c ur r e nt s t ud y ( 58% ) G i ve n t ha t s ur ve ys f r om onl y 28 of t he 50 a ge nc i e s r e gi s t e r e d w i t h P W S U S A w e r e r e c e i ve d, t he c ur r e nt s t udy m a y ha ve f a i l e d t o i de nt i f y a l a r ge pr opo r t i on o f i ndi v i dua l s w i t h P W S i n t he c ount r y I t i s unc l e a r i f a l ow e r S I B pr e va l e nc e e s t i m a t e w oul d ha ve be e n obs e r ve d i f t he s a m pl e ha d c ons i s t e d of a c ons i de r a bl y h i ghe r num be r of i ndi vi dua l s w i t h P W S H ow e ve r t he f e w r e gi s t e r e d a ge nc i e s r e por t e d s e r ve d a r e l a t i ve l y l a r ge num be r of i ndi vi dua l s w i t h P W S O ne of t he t w o f a c i l i t i e s r e por t e d t o s e r ve t he l a r ge s t num be r of i ndi vi dua l s w i t h P W S r e t ur ne d s ur ve ys f or 100 % o f t he i ndi vi dua l s t he y r e por t e d t o s e r ve O f t he 63 i ndi v i dua l s w i t h P W S a t f a c i l i t y w he r e t hi s s t udy w a s c onduc t e d, 43 i ndi vi dua l s ( 68% ) w e r e r e po r t e d t o e nga ge i n S I B O f t he 117 i ndi vi dua l s i n t he c ur r e nt s t udy w ho e nga ge d i n S I B 75% w e r e r e po r t e d t o e nga ge i n s ki n pi c ki ng, m uc h hi ghe r t ha n t he r e por t e d pr e va l e nc e of s ki n p i c ki ng i n t he ge ne r a l popul a t i on of i ndi vi dua l s w i t h D D w hi c h t ypi c a l l y r a nge s f r om 16% t o 25% ( E m be r s e n & W a l ke r 1990; G r i f f i n e t a l 1986; R oj a hn, 1984 ) H ow e ve r t he S I B pr e va l e nc e e s t i m a t e of t he c ur r e nt s t udy i s c ons i s t e nt w i t h s t udi e s i n t he P W S l i t e r a t ur e w hi c h s ugge s t t ha t s ki n pi c ki ng pr e va l e nc e i n P W S r a nge s f r om 65% t o 97% a m on g c hi l dr e n a nd a dul t s w i t h t he di a gnos i s ( D yke ns & S ha h, 2003 ; W i gr e n & H e i m a nn, 2001 ) I t ha s be e n s ugge s t e d t ha t i n a ddi t i on t o t opogr a phi c a l di f f e r e nc e s i n S I B bodi l y l oc a t i ons of S I B di f f e r a m ong d i a gnos t i c gr oups of i ndi vi dua l s w i t h D D ( T hom ps on & C a r us o, 2002) F o r e xa m pl e S ym ons a nd T hom ps on ( 1997 ) f ound t ha t 80 % of i nj u r i e s e xhi bi t e d by i ndi vi dua l s w i t h s e ve r e i nt e l l e c t ua l di s a bi l i t i e s a nd a ut i s m oc c ur r e d on 5 % of t he body s s ur f a c e a r e a ( he a d, ha nds f i nge r a nd t hi gh ) Y e t

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42 i ndi vi dua l s w i t h C or ne l i a de L a nge s yndr om e t ypi c a l l y bi t e t he t i ps of t he i r f i nge r s ( B e r ne y, I r e l a nd, & B ur n, 1999) a nd i ndi vi dua l s w i t h R e t t s ydr om e t ypi c a l l y e i t he r w r i ng t he i r ha nds s c r a t c hi ng ha nds w i t h f i nge r na i l s o r e nga ge i n ha nd m out hi ng ( N or m ur a & S e ga w a 1990) I ndi vi dua l s w i t h P W S ha ve be e n r e po r t e d t o s ki n p i c k t he i r nos e uppe r a r m s f or e a r m s t hi ghs kne e s l ow e r l e g, a nd f e e t ( C a s s i dy, 1984; D yke ns e t a l 1997) A l t hough no f o r m a l a t t e m pt w a s m a de t o c a t a l ogue s pe c i f i c body l oc a t i ons of s ki n pi c ki ng i n t he s ubj e c t popul a t i on i n S t udy 1, i nf or m a t i on f r om t he S I T s c a l e a nd di r e c t obs e r va t i ons of s ki n pi c ki ng dur i ng S t udy 2 a r e c ons i s t e nt w i t h body l oc a t i ons r e por t e d i n t he s e s t u di e s I t ha s be e n s ugge s t e d t ha t di f f e r e nc e s i n S I B t opog r a phy a nd bod i l y l oc a t i on of i nj ur y a m ong di f f e r e nt de ve l opm e nt a l di s a bi l i t i e s m a y r e f l e c t di f f e r e nt di f f e r e nt unde r l yi ng ne u r oc he m i c a l m e c ha ni s m s ( T hom ps on & C a r us o, 2002) a l t hough t he r e i s no e m pi r i c a l e vi de nc e a t t hi s t i m e t o s uppor t t hi s c onc l us i on. R e s ul t s of e pi de m i ol ogi c a l s t udi e s of f unc t i ona l a na l ys e s ( e g. I w a t a e t a l 1994; K a hng e t a l 2002) of t e n s how t ha t i ndi vi dua l s w i t h d i f f e r e nt di a gnos e s e xhi bi t t opogr a phi c a l l y s i m i l a r be ha vi or ( e g s e l f bi t i ng) F u r t he r f unc t i ona l a na l ys i s r e s ul t s of t e n s how t ha t s i m i l a r t opogr a phi e s of s e l f i nj ur y s e r ve di f f e r e nt f unc t i ons ( e g. s e l f bi t i ng m a i nt a i ne d b y s oc i a l pos i t i ve r e i nf o r c e m e nt vs s e l f bi t i ng m a i nt a i ne d by s oc i a l ne ga t i ve r e i nf o r c e m e nt ) T hus t opogr a phi c a l di f f e r e nc e s a s s oc i a t e d w i t h di f f e r e nt di s a bi l i t i e s m a y s i m pl y b e c or r e l a t i ona l T he r e s ul t s of S t udy 2 s how e d t ha t a l a r ge pr opo r t i on of s ubj e c t s e xhi bi t e d s ki n p i c ki ng pr i m a r i l y w he n t he y w e r e a l one O ne i nt e r e s t i ng a l be i t s pe c ul a t i ve e xpl a na t i on of t he t opogr a phi c a l di f f e r e nc e of S I B i n P W S i s t ha t pe r ha ps t he s e i ndi vi dua l s phys i ol ogi c a l m a ke up i nc r e a s e s s e n s i t i vi t y t o c e r t a i n t ype s of e nvi r on m e nt a l e ve nt s a s r e i nf or c e r s I ndi vi dua l s w i t h P W S a r e a l s o t ypi c a l l y hype r pha gi c ( i e t he y e ng a ge i n e xc e s s i ve ove r e a t i ng) a nd, t he r e f or e a r e t ypi c a l l y m or bi dl y obe s e T he r e s ul t i s l a r ge l i poi d de pos i t s a nd e xc e s s s ki n ( of t e n s ubs t a nt i a l

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43 f ol ds of s ki n a r e obs e r ve d e s pe c i a l l y i n t hos e i ndi v i dua l s w ho l os e a c ons i de r a bl e a m ount o f w e i ght ) T he s e uni que phys i ol ogi c a l c ha r a c t e r i s t i c s m a y c r e a t e a uni que s t i m ul us t ha t e voke s a r e s pons e ( e g. pi c ki ng ) t ha t gi ve n a ge ne t i c s e ns i t i vi t y t o a ut om a t i c r e i n f o r c e m e nt s t r e ngt hs t ha t t ype of r e s pons e T hi s m a y be e s pe c i a l l y l i ke l y t o oc c ur i n s i t ua t i ons i n w hi c h a l t e r na t i ve s t i m ul a t i on i s l ow ( e g. i nd i vi dua l i s a l one w i t hout pr e f e r r e d i t e m s or a c t i vi t i e s ) A n a ddi t i ona l s pe c ul a t i on r e ga r di ng t opogr a phi c a l di f f e r e nc e s be t w e e n S I B i n t he P W S a nd D D popul a t i ons a l s o r e l a t e s t o t he obs e r va t i on t ha t m a ny P W S i ndi vi dua l s e nga ge i n s ki n pi c ki ng w he n a l one A l t hough s uc h s ki n pi c ki ng m a y be s e ns i t i ve t o a ut om a t i c r e i nf or c e m e nt t he be ha vi or m a y a l s o be i nf l ue nc e d by s oc i a l a t t e nt i on a s puni s hm e nt T ha t i s i t i s pos s i bl e t ha t t he s e i ndi vi dua l s ha ve a l ong hi s t or y of c a r e pr ovi de r s s oc i a l l y puni s hi ng oc c ur r e nc e s of S I B s uc h t ha t t he be ha vi or c om e s unde r s t i m ul us c ont r ol ( i e oc c ur s i n t he a bs e nc e of ot he r pe opl e but doe s not oc c ur i n t he i r pr e s e nc e ) F u r t he r pi c k i ng s pe c i f i c a r e a s of t he body i n w hi c h e vi de nc e of pi c ki ng ( i e w ounds ) i s e a s i l y hi dde n f r om ot he r s m a y a voi d s oc i a l c e ns ur e M a ny of t he s ubj e c t s i n S t udy 2 w ho e nga ge d i n s ki n pi c ki ng i n t he a l on e c ondi t i on t e nde d t o p i c k t he i r f or e a r m s s t om a c h, hi ps t hi ghs a nd t he bo t t om s of t he i r f e e t C l ot hi ng t ypi c a l l y c ove r s t he s e a r e a s of t he body A ne c dot a l l y, a num be r o f i ndi v i dua l s w e r e obs e r ve d t o r e m ove pi e c e s of c l ot hi ng a t t he be gi nni ng of a l one s e s s i ons ( f ol l ow i ng t he t he r a pi s t s e xi t f r o m t he r oom ) T he e nd of a l one s e s s i ons w a s s i gna l e d by a knoc k on t he door a nd e nt r a nc e i nt o t he r oom by a t he r a pi s t ; how e ve r da t a c ol l e c t or s c ont i nue d t o m o ni t or t he r oom v i a hi dde n c a m e r a T he s e i ndi vi dua l s w e r e a l s o obs e r ve d t o qui c kl y r e pl a c e t he i r c l ot hi ng i m m e di a t e l y f ol l ow i ng t he knoc k on t he door ( e i t he r be f or e o r s i m ul t a ne ous w i t h, t h e t he r a pi s t s e nt r a nc e ) S t udy 2 s how e d t ha t t he m a j or i t y o f c a s e s of S I B ( 83% ) w e r e m a i nt a i ne d by a ut om a t i c r e i nf or c e m e nt w he r e a s onl y 17% of t he s ubj e c t s e xhi bi t e d a t t e nt i on m a i nt a i ne d S I B N o c a s e s

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44 of e s c a pe m a i nt a i ne d S I B w e r e obs e r ve d. T hi s di s t r i but i on o f f unc t i ons a l s o di f f e r s not i c e a bl y f r om t ha t r e por t e d f or S I B i n ge ne r a l popul a t i ons o f i ndi vi dua l s w i t h D D f or w hom t he l a r ge s t pe r c e nt a ge of c a s e s w a s m a i nt a i ne d by s oc i a l r e i nf or c e m e nt ( H a nl e y, 20 03; I w a t a e t a l 1994 ; K a hng e t a l 2002; K ur t z e t a l 2003 ) T he f a c t t ha t s e ve r a l s ubj e c t s S I B w a s m a i nt a i ne d by s oc i a l pos i t i ve r e i n f or c e m e nt c a l l s i nt o que s t i on t he c om m on c onc e pt ua l i z a t i on of S I B a s a n obs e s s i ve c om pul s i ve di s or de r ( O C D ) F or t he s e s ubj e c t s s oc i a l c ons e que nc e s w e r e di r e c t l y r e s pons i bl e f or t he m a i nt e na nc e of S I B w hi c h i s i nc ons i s t e nt w i t h a c onc e pt ua l i z a t i on of S I B a s e i t he r obs e s s i ve or c om pul s i ve T he r e f or e t he s e r e s ul t s s e e m t o l e nd f ur t he r e vi de nc e t ha t S I B i n P W S m a y be s e ns i t i ve t o e nvi r onm e nt a l i nf l ue nc e s w hi c h unde r s c or e s t he i m por t a nc e of e xa m i ni ng e nvi r onm e nt a l c or r e l a t e s of be ha vi or di s or de r s r e ga r dl e s s of di a gnos t i c l a be l T hr e e pa t t e r ns o f r e s pondi ng du r i ng a f unc t i ona l a na l ys i s a r e ge ne r a l l y i ndi c a t i ve of be ha vi or m a i nt a i ne d by a ut om a t i c r e i n f or c e m e nt : ( a ) t he be ha vi or oc c ur s e xc l us i ve l y i n t he a l one c ondi t i on, ( b ) t he be ha vi or i s c ons i s t e nt l y hi ghe r i n t he a l one c ondi t i on but oc c ur s du r i ng o t he r c ondi t i ons a s w e l l or ( c ) hi gh l e ve l s of be ha vi or o c c ur dur i ng a l l c ondi t i ons A l t hough t he s e t ype s of out c om e s dur i ng a f unc t i ona l a na l ys i s e f f e c t i ve l y r ul e out s oc i a l r e i nf o r c e m e nt a s a s our c e of m a i nt e na nc e t he y do not i de nt i f y t he s pe c i f i c t ype of a ut om a t i c r e i nf or c e m e nt pr oduc e d by t he be ha vi o r F o r e xa m pl e t he be ha v i or c oul d be m a i nt a i ne d by s e ns or y s t i m ul a t i on ( K e nne dy & S ouz a 1995; R i nc ove r 1 978) or pa i n a t t e nua t i on ( C a r r & M c D ow e l l 1980) A l t hough no t a c c ount e d f o r by t he c ur r e nt s t udy, i t i s pos s i bl e t ha t S I B t ha t r e s ul t s i n t he pr oduc t i on of ne w w ounds pr ovi de s e vi de nc e f o r a n a ut om a t i c pos i t i ve r e i n f or c e m e nt a c c ount ( s e ns or y s t i m ul a t i on) w he r e a s S I B t ha t a gg r a va t e s e xi s t i ng w ounds i s e vi de nc e f or a n a ut om a t i c ne g a t i ve r e i nf or c e m e nt a c c ount ( pa i n a t t e nua t i on) S e ve r a l i ndi vi dua l s i n S t udy 2 e xhi bi t e d S I B

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45 a c r os s a s s e s s m e nt c ondi t i ons T hi s pa t t e r n o f r e s pondi ng c oul d be c ons i de r e d c ons i s t e nt w i t h a l l of t he hypot he s i z e d s our c e s of a ut om a t i c r e i nf o r c e m e nt I t i s a l s o pos s i bl e t ha t t hi s pa t t e r n s ugge s t s t he i nf l ue nc e of s om e ot he r s our c e of r e i n f or c e m e nt R e ga r dl e s s be c a us e t he be ha vi or oc c ur r e d i nde pe nde nt of s oc i a l c ont i nge nc i e s a nd oc c ur r e d a t hi gh r a t e s a c r os s a l l a s s e s s m e nt c ondi t i ons t he r e i n f or c e r r e s pons i bl e f or be ha vi or a l m a i nt e na nc e w a s a l w a ys pr e s e nt a nd a c c e s s t o a l t e r na t i ve s our c e s of s t i m ul a t i on i n t he ot he r c o ndi t i ons di d not c om pe t e w i t h t he r e i nf o r c e r m a i nt a i ni ng S I B H ow e ve r m os t of t he s ubj e c t s i n S t udy 2 e nga ge d i n S I B e i t he r e xc l us i ve l y or a l m os t e xc l us i ve l y i n t he a l one c ondi t i on a s c om pa r e d t o t he ot he r c ondi t i ons T hi s pa t t e r n of r e s pondi ng s ugge s t s a t l e a s t t w o pos s i bi l i t i e s F i r s t pe r ha ps a c c e s s t o a l t e r na t i ve s t i m ul a t i on ( e g. p r e f e r r e d i t e m s i n t he pl a y c ondi t i on t a s k a c t i vi t i e s i n t he de m a nd c ondi t i on, i t e m s i n t he a t t e nt i on c ondi t i on) s uppr e s s e d S I B ( i e c om pe t e d w i t h t he m a i nt a i ni ng r e i nf or c e r ) S e c ond, t he pr e s e nc e of a t he r a pi s t i n t he a t t e nt i on pl a y a nd d e m a nd c ondi t i ons m a y ha ve be e n di s c r i m i na t i ve f or s oc i a l a t t e nt i o n. I f t he s e i ndi vi d ua l s ha d a hi s t or y o f puni s hm e nt f or e nga gi ng i n S I B t he p r e s e nc e of a n a dul t m a y ha ve s uppr e s s e d S I B i n t he s e c ondi t i ons T o i nf or m a l l y de t e r m i ne i f a c c e s s t o a l t e r na t i ve s t i m ul a t i on pe r s e w oul d c om pe t e w i t h S I B t w o p r obe s e s s i ons i n w hi c h pr e f e r r e d i t e m s w e r e a va i l a bl e but t he t he r a pi s t w a s a bs e nt w e r e c onduc t e d w i t h S ubj e c t B G w ho e nga ge d i n S I B e xc l us i ve l y i n t he a l one c ondi t i on of t he f unc t i ona l a na l ys i s ( F i gur e 3 5, m i ddl e l e f t pa ne l ) S ubj e c t B G ne ve r e nga ge d i n S I B dur i ng t h e s e s e s s i on s ( t ot a l t i m e 30 m i n) T hi s pa t t e r n o f r e s pondi ng m a y ha ve di r e c t i m pl i c a t i ons f or t r e a t m e nt o f S I B f or t he s e i ndi vi dua l s S pe c i f i c a l l y, pr ogr a m m i ng nonc ont i n ge nt ( or pe r ha ps c ont i nge nt ) a c c e s s t o pr e f e r r e d i t e m s a nd a c t i vi t i e s m i ght s uc c e s s f ul l y c om pe t e w i t h t he r e i nf or c e r r e s pons i bl e f or S I B A s pr e vi ous l y m e nt i one d, a s s e s s m e nt a nd t r e a t m e nt of a ut om a t i c a l l y r e i nf o r c e d be ha vi or c a n pr e s e nt a c ha l l e nge be c a us e t he r e i nf or c e r ( s ) r e s pons i bl e f or t he be ha vi or a r e not i n di r e c t

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46 c ont r ol by t he t he r a pi s t A s s e s s m e nt a nd t r e a t m e nt i s e ve n m or e c ha l l e ngi ng w he n a be ha vi or oc c ur s c ove r t l y ( i e e vi de nc e of a be ha vi or i s a pp a r e nt but t he be ha vi or i s no t obs e r ve d) S e ve r a l f e a t ur e s of t he r e s ul t s f r om S t udy 2 s ugge s t t ha t a nu m be r o f t he c a s e s of S I B w e r e c a s e s of c ove r t be ha vi o r F i r s t t he pa t t e r n o f r e s pondi ng e xhi bi t e d by S ubj e c t P M ( F i gur e 3 1) w a s l i ke l y i ndi c a t i ve of c ove r t S I B A ne c dot a l l y, J M w a s obs e r ve d t o e nga ge i n ot he r be ha vi or s i ndi c a t i ng t ha t s he ha d de t e c t e d t he pr e s e nc e of t he obs e r ve r s dur i ng a l one s e s s i ons c onduc t e d i n r oom s w i t h obs e r va t i ona l m i r r o r s T ha t i s i m m e di a t e l y pr i or t o t he e l i m i na t i on of r e s pondi ng dur i ng t he s e s e s s i ons J M w a s obs e r ve d t o s t a r e a t t he obs e r va t i ona l m i r r or knoc k on t he w i ndow a nd w a ve H ow e ve r r e s pondi ng pe r s i s t e d a t hi gh l e ve l s dur i ng a l one s e s s i ons c onduc t e d i n t he r oo m e qui ppe d w i t h t he h i dde n c a m e r a ( i e t he r oo m w i t hout a n obs e r va t i ona l m i r r or ) S e c ond, a l l t he s ubj e c t s w ho e xhi bi t e d e x c l us i ve ( or a l m os t e xc l us i ve ) S I B dur i ng t he a l one c o ndi t i on i m m e di a t e l y c e a s e d t o e nga ge i n S I B a t t he s t a r t of a t t e nt i on s e s s i ons ( w hi c h w e r e a l s o c onduc t e d i n t he h i dde n c a m e r a r oo m a n d a l w a ys c onduc t e d i m m e di a t e l y f ol l ow i ng a l one s e s s i on s ) O ne l i m i t a t i on of t he c onc l us i on t ha t t he s e s ubj e c t s e xhi bi t e d c ove r t S I B w a s t ha t S t udy 2 di d no t c ont a i n a n e xpl i c i t c ont r ol c on di t i on ( i e a c ondi t i on i de nt i c a l t o t he a l one c ondi t i on e xc e pt f or t he p r e s e nc e of a t he r a pi s t ) A l t hough i t i s s pe c ul a t i ve w he t he r t he c a s e s obs e r ve d w e r e c a s e s of c ove r t S I B one i m pl i c a t i o n of t h i s f i ndi ng i s t ha t t he S I B pr e va l e nc e f i ndi ngs i n S t udy 1 m a y a c t ua l l y be a n unde r e s t i m a t e i f t he da t a f r om S t udy 2 a r e r e pr e s e nt a t i ve of t he P W S popul a t i on a s a w hol e F ut ur e r e s e a r c h m i ght f oc us on i m pr ovi ng m e t hod s t o de t e c t a s s e s s a nd t r e a t c ove r t pr obl e m be ha vi or T o da t e r e l a t i ve l y f e w s t udi e s ha ve e xa m i ne d m e t hods t o de t e c t c ove r t be ha vi or W e us e d a h i dde n c a m e r a i n t he pr e s e nt s t udy; a not he r pos s i bi l i t y w oul d be t he us e of i ndi r e c t m e a s ur e s of S I B ( s pe c i f i c a l l y, t he p r e s e nc e of w ou nds ) I t ha s be e n s how n r e c e nt l y t ha t

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47 pe r m a ne nt pr oduc t m e a s ur e s of S I B a r e s e ns i t i ve t o t r e a t m e nt c ont i nge nc i e s ( T w ohi g & W oods 2001; W i l s on, I w a t a & B l oom i n pr e s s ) ; a ddi t i on a l da t a a r e ne e de d t o e s t a bl i s h t he ge ne r a l i t y o f t hi s f i ndi ng. I t i s pos s i b l e t ha t S I B i s s e ns i t i ve t o r e m ot e c ont i nge nc i e s pl a c e d on r e s pons e pr oduc t s T ha t i s i t i s t he r e s pons e pr oduc t t ha t i s a c t ua l l y m a i nt a i ne d a s c om pa r e d t o t he r e s pons e i t s e l f F o r e xa m pl e r e s pondi ng ( s ki n pi c ki ng) m a y be s uppr e s s e d i n t he pr e s e nc e of ot he r s ( be c a us e of a hi s t or y of puni s hm e nt ) a nd be gi ns t o oc c ur c ove r t l y be c a us e t he r e s pons e pr oduc t ( w ound) e ve nt ua l l y p r oduc e s s oc i a l r e i nf o r c e m e nt F ur t he r f e w s t udi e s ha ve f ul l y a s s e s s e d t he e xt e nt of c ove r t be ha vi or T ha t i s t he a s s e s s m e nt of c ov e r t be ha vi or i n m os t s t udi e s onl y i nc l ude d a n a l one c ondi t i on ( s i m i l a r t o S t udy 2) w i t hou t t he a ddi t i on o f a n e xpl i c i t c ont r ol c ondi t i on f or c ove r t be ha vi o r O ne not a bl e e xc e pt i on w a s a s t udy by P a i s e y a nd W hi t ne y ( 1989) w ho a s s e s s e d t he pi c a f or a 16 y e a r ol d bo y w i t h pr o f ound m e nt a l r e t a r da t i on T he s ubj e c t w a s obs e r ve d dur i ng s e ve r a l a s s e s s m e nt c ondi t i ons i nc l udi ng a c ondi t i on i n w hi c h obs e r ve r s w e r e pr e s e nt but di d not i n t e r ve ne or i nt e r a c t w i t h t he s ubj e c t a nd a c ondi t i on i n w hi c h t he s ubj e c t w a s a l one ( obs e r ve r s w e r e hi dde n f r om vi e w of t he s ubj e c t ) T he hi ghe s t l e ve l of pi c a w a s obs e r ve d i n t he a l one c ondi t i on s ugge s t i ng t ha t t he be ha vi o r w a s c ove r t A num be r of s t udi e s ha ve e va l ua t e d t r e a t m e nt s f o r pr obl e m be ha vi or r e por t e d t o be c ove r t i n na t ur e ( t hough onl y a f e w w e r e c a s e s of S I B ) M a gl i e r i D e l e on, R odr i gue z C a t t e r a nd S e vi n ( 2000) m e a s ur e d f ood s t e a l i ng by 1 s ubj e c t w i t h m ode r a t e m e nt a l r e t a r da t i on by w e i ghi ng f oods be f or e a nd a f t e r s e s s i ons T he a ut ho r s f ound s i m i l a r r e duc t i ons i n f oo d s t e a l i ng w i t h bot h w i t hi n s e s s i on a nd pos t s e s s i on r e pr i m a nds R i ngda hl e t a l ( 2002) obs e r ve d t he s t e r e ot ypy ( ha nd f l a ppi ng) of 1 s ubj e c t vi a a c a m e r a ( no t hi dd e n) a nd f ound s t e r e ot ypy t o oc c ur onl y i n t he a l one c ondi t i on of t he f u nc t i ona l a na l ys i s S ubs e que nt l y, a D R O p r oc e dur e i n w hi c h t he s ubj e c t e a r ne d a c c e s s t o pr e f e r r e d i t e m s c ont i nge nt on t he a bs e nc e of ha nd f l a ppi ng w a s s uc c e s s f ul i n

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48 r e duc i ng s t e r e ot ypy t o ne a r z e r o. G r a c e T hom ps o n, a nd F i s he r ( 1996 ) us e d di f f e r e nt i a l r e i nf or c e m e nt of ot he r be ha vi or ( D R O ) i n w hi c h r e i nf or c e r s w e r e de l i ve r e d c ont i nge nt on t he a bs e nc e of t i s s ue da m a ge t o r e duc e c ove r t S I B f or 1 s ubj e c t G i ve n t he r e l a t i ve l y f e w num be r of e xi s t i ng s t udi e s of c ove r t S I B a nd t he f a c t t ha t m os t of t he e xi s t i ng s t udi e s c ons i s t of e i t he r a s i ngl e or onl y a f e w s ubj e c t s f ur t he r r e s e a r c h on d e t e c t i on, a s s e s s m e nt a nd t r e a t m e nt of c ove r t S I B i s w a r r a nt e d

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49 T a bl e 4 1. L a r ge N s t udi e s s how i ng S I B pr e va l e n c e e s t i m a t e s S t udy S a m pl e # S e t t i ng S I B P r e va l e nc e G r i f f i n e t a l ( 1986 ) 2, 663 R e s i de nt i a l & s t a t e s c hool s f or M R i n T X 13. 6% H i l l & B r ui ni nks ( 1984) 2, 271 236 na t i ona l publ i c & pr i va t e i ns t i t ut i ons 14. 2% M a ur i c e & T r ude l ( 1982) 2, 858 3 i ns t i t ut i ons i n Q ue be c 14. 1% B or t hw i c k, M e ye r s & E ym a n ( 1981) 6, 202 R e c i pi e nt s of D D s e r vi c e s i n 3 s t a t e s 19. 8% R os s ( 1972) 11, 139 R e s i de nt s of C A s t a t e hos pi t a l s 18. 1% J a c obs on ( 1982) 30, 578 I ndi vi dua l s w / M R i n N Y 8. 2% T a bl e 4 2. S m a l l e r N s t udi e s s how i ng S I B pr e va l e nc e e s t i m a t e s S t udy S a m pl e # S e t t i ng S I B P r e va l e nc e R oj a hn ( 1984) 91 R e s i de nt s of a publ i c r e s i de nt i a l f a c i l i t y w i t h s e ve r e / pr of ound M R 65. 9% B odf i s h e t a l ( 1995) 210 R e s i de nt s of hos pi t a l f or pe opl e w i t h M R 46. 6% E m be r s on & W a l ke r ( 1990) 525 R e s i de nt s of a hos pi t a l f or pe opl e w i t h M R 31%

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50 A P P E N D I X A N A T I O N A L S U R V E Y O N S E L F I N J U R I O U S B E H A V I O R I N T H E P R A D E R W I L L I S Y N D R O M E N A T I O N A L S U R V E Y O N S E L F I N J U R I O U S B E H A V I O R ( S I B ) I N T H E P R A D E R WI L L I S Y N D R O M E ( P WS ) I n s t r u c t i o n s : C o m p l e t e P a r t I f o r e v e r y p e r s o n y o u s e r v e T h e n e x a m i n e t h e l i s t o f b e h a v i o r s i n P a r t I I c a r e f u l l y I f t h e p e r s o n ( a ) h a s n o t d i s p l a y e d a n y o f t h e s e b e h a v i o r s ( o r a n y o t h e r s e l f i n j u r i o u s b e h a v i o r ) f o r t h e p a s t s i x m o n t h s a n d ( b ) i s n o t c u r r e n t l y r e c e i v i n g a n y f o r m o f t r e a t m e n t t o m a n a g e t h e s e b e h a v i o r s c h e c k t h e f i r s t s t a t e m e n t b e l o w t h e n d e t a c h a n d r e t u r n t h e f i r s t p a g e O t h e r w i s e c h e c k t h e s e c o n d s t a t e m e n t b e l o w c o m p l e t e P a r t s I I a n d I I I a n d t h e n r e t u r n t h e e n t i r e s u r v e y w i t h t h e r e q u e s t e d d o c u m e n t a t i o n P A R T 1 : G EN ER A L I N F O R M A T I O N C o m p a n y / O r g a n i z a t i o n : _ _ _ _ _ _ _ _ C i t y : _ _ _ S t a t e : _ P e r s o n c o m p l e t i n g f o r m : _ _ _ _ _ _ _ P o s i t i o n : _ _ _ _ _ _ D a t e f o r m c o m p l e t e d : _ _ _ _ _ _ _ _ P h o n e # : _ _ _ _ _ _ C l i e n t s i n i t i a l s : _ _ _ _ _ _ _ _ _ S e x : M F A g e : _ _ L e v e l o f f u n c t i o n i n g : M i l d M o d e r a t e / S e v e r e / P r o f o u n d S e n s o r y i m p a i r m e n t s : H e a r i n g V i s i o n T y p e o f P W S : M a l a d a p t i v e B e h a v i o r s ( o t h e r t h a n S I B ) : _ P a t e r n a l d e l e t i o n _ H o a r d i n g t h i n g s _ M a t e r n a l U n i p a r e n t a l D i s o m y ( U P D ) _ F o o d s t e a l i n g _ I m p r i n t i n g d e f e c t _ T e m p e r t a n t r u m s ( e g v e r b a l o u t b u r s t s d r o p p i n g f l o o r ) _ P W S L i k e _ A g g r e s s i o n _ T r a n s l o c a t i o n _ P r o p e r t y d e s t r u c t i o n _ U n k n o w n _ N o n c o m p l i a n c e _ S t e r e o t y p i c b e h a v i o r ( r e p e t i t i v e r i t u a l s ) T h e i n d i v i d u a l n a m e d a b o v e h a s n o t d i s p l a y e d a n y s e l f i n j u r i o u s b e h a v i o r f o r t h e p a s t s i x m o n t h s a n d i s n o t r e c e i v i n g a n y f o r m o f t r e a t m e n t o r p r o g r a m t o m a n a g e s u c h b e h a v i o r s T h e i n d i v i d u a l n a m e d a b o v e h a s d i s p l a y e d s e l f i n j u r i o u s b e h a v i o r w i t h i n t h e p a s t s i x m o n t h s o r i s c u r r e n t l y r e c e i v i n g t r e a t m e n t t o m a n a g e s u c h b e h a v i o r s

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51 P A R T I I : D E S C R I P T I O N O F S I B C h e c k a n y o f t h e fo l l o w i n g b e h a v i o r s th a t h a v e o c c u r r e d d u r i n g th e p a s t s i x m o n th s (c h e c k a l l t h a t a p p l y ). F o r e a c h b e h a v i o r th a t h a s o c c u r r e d c i r c l e a n u m b e r to i n d i c a te i ts fr e q u e n c y a n d s e v e r i ty (s e e k e y s b e l o w ). F re q u e n c y K e y : In j u ry S e v e ri t y K e y : 1 : O c c u rs h o u rl y 1 : H a s p ro d u c e d l o s s o f s e n s o ry o r m o t o r fu n c t i o n (v i s i o n m o v e m e n t e t c ) 2 : O c c u rs a t l e a s t o n c e a d a y b u t n o t h o u rl y 2 : H a s p ro d u c e d p e rm a n e n t d i s fi g u re m e n t 3 : O c c u rs a t l e a s t o n c e a w e e k b u t n o t d a i l y 3 : H a s p ro d u c e d n o p e rm a n e n t d a m a g e 4 : O c c u rs a t l e a s t o n c e a m o n t h b u t n o t w e e k l y 5 : O c c u rs l e s s t h a n o n c e a m o n t h M e d i c a l Ca re K e y : 1 H a s re q u i re d h o s p i t a l i z a t i o n o r s u rg i c a l i n t e rv e n t i o n (s u t u re s c a s t e t c ) 2 H a s re q u i re d m i n o r m e d i c a l c a re o n l y 3 H a s n o t re q u i re d a n y c a re b y a m e d i c a l p ro fe s s i o n a l I n ju r y M e d i c a l Be h a v i o r F r e q u e n c y S e v e r i ty C a r e _ A e r o p h a g i a : A i r s w a l l o w i n g 1 2 3 4 5 1 2 3 1 2 3 _ Bi ti n g : Cl o s u re o f u p p e r a n d l o w e r t e e t h o n a n y p a rt o f t h e b o d y 1 2 3 4 5 1 2 3 1 2 3 _ Bo d y b a n g i n g : A u d i b l e / fo rc e fu l c o n t a c t o f a b o d y p a rt (o t h e r t h a n t h e h e a d ) a g a i n s t a s t a t i o n a ry o b j e c t 1 2 3 4 5 1 2 3 1 2 3 _ Bo d y h i tti n g : A u d i b l e / fo rc e fu l c o n t a c t o f o n e b o d y p a rt a g a i n s t a n o t h e r (o t h e r t h a n t h e h e a d ) 1 2 3 4 5 1 2 3 1 2 3 _ Br u x i s m : T e e t h g ri n d i n g 1 2 3 4 5 1 2 3 1 2 3 _ C h o k i n g : F o rc e fu l c l o s u re o f b o t h h a n d s a ro u n d n e c k 1 2 3 4 5 1 2 3 1 2 3 _ C u tti n g : A p p l y i n g s h a rp i n s t ru m e n t t o b o d y p a rt w / s l i c i n g o r c h o p p i n g m o t i o n 1 2 3 4 5 1 2 3 1 2 3 _ Ey e p o k i n g / g o u g i n g : F o rc e fu l c o n t a c t o f a fi n g e r w i t h i n t h e o c u l a r a re a 1 2 3 4 5 1 2 3 1 2 3 _ H a i r p u l l i n g : Cl o s u re o f fi n g e r s o n h a i r w i t h a p u l l i n g m o t i o n 1 2 3 4 5 1 2 3 1 2 3 _ H a n d s u c k i n g / m o u th i n g : W e t t i n g o f fi n g e rs o r h a n d a g a i n s t l i p s o r t o n g u e 1 2 3 4 5 1 2 3 1 2 3 _ H e a d o r fa c e h i tti n g / s l a p p i n g : A u d i b l e / fo r c e fu l c o n t a c t o f a b o d y p a rt a g a i n s t t h e h e a d o r f a c e 1 2 3 4 5 1 2 3 1 2 3 _ H e a d b a n g i n g : A u d i b l e / fo rc e fu l c o n t a c t o f t h e h e a d a g a i n s t a s t a t i o n a ry o b j e c t 1 2 3 4 5 1 2 3 1 2 3 _ N a i l p u l l i n g : p u l l i n g o r p u s h i n g o f n a i l s a w a y f ro m t h e s k i n 1 2 3 4 5 1 2 3 1 2 3 _ N e c k w h i p p i n g : F o r c e fu l a n d ra p i d m o v e m e n t o f t h e h e a d 1 2 3 4 5 1 2 3 1 2 3 _ O r i f i c e d i g g i n g : In s e rt i o n o f fi n g e r o r o b j e c t s i n t o e a rs / n o s e / g e n i t a l s / re c t u m 1 2 3 4 5 1 2 3 1 2 3 _ P i c a : E a t i n g n o n fo o d i t e m s 1 2 3 4 5 1 2 3 1 2 3 _ P o l y d i p s i a : D ri n k i n g e x c e s s i v e a m o u n t s o f w a t e r 1 2 3 4 5 1 2 3 1 2 3 _ R u m i n a ti o n : Re g u rg i t a t i o n a n d r e s w a l l o w i n g o f p re v i o u s l y i n g e s t e d fo o d 1 2 3 4 5 1 2 3 1 2 3 _ S c r a tc h i n g : Ra k i n g t h e s k i n w i t h fi n g e rn a i l o r ru b b i n g a g a i n s t o b j e c t 1 2 3 4 5 1 2 3 1 2 3 _ Te e th p u l l i n g : Cl o s u r e o f fi n g e rs o n t e e t h w i t h a p u l l i n g m o t i o n 1 2 3 4 5 1 2 3 1 2 3 _ Th r o a t g o u g i n g : A u d i b l e / fo rc e fu l c o n t a c t o f h a n d o r fi n g e r a g a i n s t t h e t h ro a t 1 2 3 4 5 1 2 3 1 2 3 _ V o m i ti n g : Re g u rg i t a t i o n ( e x p u l s i o n ) o f p re v i o u s l y i n g e s t e d fo o d 1 2 3 4 5 1 2 3 1 2 3 _ O th e r : L i s t a n d d e s c ri b e a n y o t h e r fo r m o f S IB n o t i n c l u d e d a b o v e _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ 1 2 3 4 5 1 2 3 1 2 3

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52 P A R T I I I : C U R R EN T TR EA TM EN T F O R S I B 1 I n t h e p a s t 6 m o n t h s h a s t h i s p e r s o n r e c e i v e d b e e n p r e s c r i b e d m e d i c a t i o n a s t r e a t m e n t o f S I B ? Y e s l i s t d r u g s : _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ N o 2 I n t h e p a s t 6 m o n t h s h a s t h i s p e r s o n b e e n r e s t r a i n e d o r h a s t h e p e r s o n w o r n p r o t e c t i v e e q u i p m e n t d u e t o S I B ? Y e s i n d i c a t e : R e s t r a i n t P r o t e c t i v e e q u i p m e n t N o 3 I n t h e p a s t 6 m o n t h s h a s t h e p e r s o n r e c e i v e d a n y t y p e o f m e d i c a l t r e a t m e n t f o r S I B ? Y e s i n d i c a t e : H o s p i t a l i z a t i o n S u r g e r y O u t p a t i e n t v i s i t W o u n d c a r e b y n u r s e N o 4 D o e s t h i s p e r s o n h a v e a f o r m a l b e h a v i o r m a n a g e m e n t p r o g r a m s p e c i f i c a l l y d e s i g n e d t o r e d u c e S I B ? Y e s N o

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53 A P P E N D I X B T H E S E L F I N J U R Y T R A U M A ( S I T ) S C A L E P a t i e n t : _ _ _ _ _ _ _ _ E x a m i n e r : _ _ _ _ _ _ _ _ D a t e : _ _ _ P a r t 1 : G e n e r a l D e s c r i p t i o n a n d S u m m a r y o f H e a l e d I n j u r i e s C h e c k o r l i s t e a c h t y p e o f s e l f i n j u r i o u s b e h a v i o r e x h i b i t e d b y t h e p a t i e n t N e x t n o t e a n y p h y s i c a l e v i d e n c e o f h e a l e d i n j u r i e s ( s c a r s p e r m a n e n t d i s f i g u r e m e n t e t c ) a l o n g w i t h t h e s p e c i f i c s i t e S e l f I n j u r i o u s B e h a v i o r s ( c h e c k ) : A i r s w a l l o w i n g ( a e r o p h a g i a ) F o r c e f u l c o n t a c t w / h e a d / f a c e I n g e s t i o n o f i n e d i b l e m a t e r i a l s ( p i c a ) B i t i n g F o r c e f u l c o n t a c t w / o t h e r b o d y p a r t S c r a t c h i n g p i c k i n g r u b b i n g s k i n E y e g o u g i n g H a i r p u l l i n g ( t r i c h o t i l l o m a n i a ) V o m i t i n g o r r u m i n a t i o n O t h e r ( l i s t ) : _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ H e a l e d I n j u r i e s ( l i s t ) : 1 _ _ _ _ _ _ _ _ _ _ 3 _ _ _ _ _ _ _ _ _ _ 2 _ _ _ _ _ _ _ _ _ _ 4 _ _ _ _ _ _ _ _ _ _ P a r t 2 : M e a s u r e m e n t o f S u r f a c e T r a u m a F o r e a c h a r e a o f t h e b o d y c o n t a i n i n g a c u r r e n t ( u n h e a l e d ) i n j u r y e s t i m a t e t h e n u m b e r o f w o u n d s a n d n o t e t h e t y p e a n d s e v e r i t y o f t h e w o r s t w o u n d a t t h a t p a r t i c u l a r l o c a t i o n U s e t h e k e y b e l o w t o i n d i c a t e n u m b e r t y p e a n d s e v e r i t y N u m b e r : 1 : O n e w o u n d a t l o c a t i o n 2 : T w o f o u r w o u n d s a t l o c a t i o n 3 : F i v e o r m o r e w o u n d s a t l o c a t i o n T y p e : A L ( A b r a s i o n o r l a c e r a t i o n ) : A b r e a k i n t h e s k i n c a u s e d b y t e a r i n g b i t i n g e x c e s s i v e r u b b i n g o r c o n t a c t w i t h a s h a r p o b j e c t S c o r e s e v e r i t y a s : ( 1 ) A r e a i s r e d o r i r r i t a t e d w i t h o n l y s p o t t e d b r e a k s i n t h e s k i n : ( 2 ) B r e a k i n t h e s k i n i s d i s t i n c t b u t s u p e r f i c i a l ( n o a v u s i o n ) ; ( 3 ) B r e a k i n t h e s k i n i s d e e p o r e x t e n s i v e o r a v u l s i o n i s p r e s e n t C T ( C o n t u s i o n ) : A d i s t i n c t a r e a m a r k e d b y a b n o r m a l c o l o r a t i o n o r s w e l l i n g w i t h o r w i t h o u t t i s s u e r u p t u r e c a u s e d b y f o r c e f u l c o n t a c t S c o r e s e v e r i t y a s : ( 1 ) L o c a l s w e l l i n g o n l y o r d i s c o l o r a t i o n w i t h o u t s w e l l i n g ; ( 2 ) E x t e n s i v e s w e l l i n g ; ( 3 ) D i s f i g u r e m e n t o r t i s s u e r u p t u r e L o c a t i o n N u m b e r T y p e S e v e r i t y L o c a t i o n N u m b e r T y p e S e v e r i t y H e a d : L o w e r T o r s o : S c a l p 1 2 3 A L C T 1 2 3 A b d o m e n / P e l v i s 1 2 3 A L C T 1 2 3 E a r L / R 1 2 3 A L C T 1 2 3 H i p s / B u t t o c k s 1 2 3 A L C T 1 2 3 E y e L / R 1 2 3 A L C T 1 2 3 G e n i t a l i a 1 2 3 A L C T 1 2 3 E y e A r e a L / R 1 2 3 A L C T 1 2 3 R e c t u m 1 2 3 A L C T 1 2 3 F a c e 1 2 3 A L C T 1 2 3 E x t r e m i t i e s : 1 2 3 A L C T 1 2 3 N o s e 1 2 3 A L C T 1 2 3 U p p e r A r m / E l b o w L / R 1 2 3 A L C T 1 2 3 L i p s / T o n g u e 1 2 3 A L C T 1 2 3 L o w e r A r m / W r i s t L / R 1 2 3 A L C T 1 2 3 N e c k / T h r o a t 1 2 3 A L C T 1 2 3 H a n d / F i n g e r L / R 1 2 3 A L C T 1 2 3 U p p e r T o r s o : 1 2 3 A L C T 1 2 3 U p p e r L e g / K n e e L / R 1 2 3 A L C T 1 2 3 S h o u l d e r L / R 1 2 3 A L C T 1 2 3 L o w e r l e g / A n k l e L / R 1 2 3 A L C T 1 2 3 C h e s t / S t o m a c h 1 2 3 A L C T 1 2 3 F o o t / T o e L / R 1 2 3 A L C T 1 2 3 B a c k 1 2 3 A L C T 1 2 3 1 2 3 A L C T 1 2 3 P a r t 3 : S c o r i n g S u m m a r y N u m b e r I n d e x ( N I ) S e v e r i t y I n d e x ( S I ) O v e r a l l R i s k E s t i m a t e A d d a l l o f t h e s c o r e s i n t h e N u m b e r c o l u m n ( a b o v e ) a n d e n t e r t h e t o t a l : E n t e r t h e f r e q u e n c y o f s c o r e s i n t h e S e v e r i t y C o l u m n : 1 2 3 N I ( C i r c l e ) P a r t 2 T o t a l S I ( C i r c l e ) S e v e r i t y s c o r e s f r o m P a r t 2 L o w : N o i n j u r i e s o r a n y A L 1 C T 1 o r A L 2 e x c e p t n e a r e y e s 0 : N o i n j u r i e s 0 : N o i n j u r i e s 1 : 1 4 1 : A l l s e v e r i t y s c o r e s a r e 1 s 2 : 5 8 2 : O n e 2 ; N o 3 s M o d e r a t e : A n y A L 2 n e a r e y e s A n y C T 2 e x c e p t o n h e a d 3 : 9 1 2 3 : T w o o r m o r e 2 s ; N o 3 s 4 : 1 3 1 6 4 : N o m o r e t h a n o n e 3 5 : 1 7 o r m o r e 5 : T w o o r m o r e 3 s H i g h : A n y C T 2 o n h e a d A n y A L 3 o r C T 3 1 9 9 0 T h e F l o r i d a C e n t e r o n S e l f I n j u r y

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54 L I S T O F R E F E R E N C E S A nde r s on, L T & E r ns t M ( 1994 ) S e l f i nj ur y i n L e s c h N yha n di s e a s e J our nal of A ut i s m and D e v e l opm e nt al D i s or de r s 24 67 81. B e r ne y, T P I r e l a nd M & B ur n, J ( 1999) B e ha vi or a l phe not ype of C or ne l i a de L a nge s yndr om e A r c hi v e s of D i s e as e i n C hi l dhood, 81 333 336. B odf i s h, J W C r a w f or d, T W P ow e l l S B P a r ke r D E G ol de n, R N & L e w i s M H ( 1995) C om pul s i ons i n a dul t s w i t h m e nt a l r e t a r da t i on: P r e va l e nc e phe nom e nol ogy a nd c o m or bi di t y w i t h s t e r e ot ypy a nd s e l f i nj ur y A m e r i c an J our nal on M e nt al R e t ar dat i on, 100 183 192 B or t hw i c k, S A M e ye r s C E & E ym a n, R K ( 1981) C om pa r a t i ve a da pt i ve a nd m a l a da pt i ve be ha vi or of m e nt a l l y r e t a r de d c l i e nt s of f i ve r e s i de nt i a l s e t t i ngs i n t h r e e w e s t e r n s t a t e s I n R H B r ui ni nks C E M e ye r s B B S i gf or d & K C L a ki n ( E ds ) D e i ns t i t ut i onal i z at i on and c om m uni t y adj us t m e nt of m e nt al l y r e t ar de d pe opl e m onogr aph 4 ( pp 351 359) W a s hi ngt on, D C : A m e r i c a n A s s oc i a t i on on M e nt a l D e f i c i e nc y. C a r r E G ( 1977) T he m ot i va t i on o f s e l f i n j ur i ou s be ha vi or : A r e vi e w of s om e hypo t he s e s P s y c hol ogi c al B ul l e t i n 84 800 816 C a r r E G & M c D ow e l l J J ( 1980) S oc i a l c on t r ol of s e l f i nj u r i ous be ha vi or o f o r ga ni c e t i ol ogy. B e ha v i or T he r apy 11 402 409. C a r r E G N e w s om C D & B i nkof f J A ( 197 6) S t i m u l us c ont r ol o f s e l f de s t r uc t i ve be ha vi or i n a ps yc hot i c c hi l d. J our nal of A bnor m a l C hi l d P s y c hol ogy 4 139 153. C a s s i dy, S B ( 1984 ) P r a de r W i l l i s yndr om e C ur r e n t P r obl e m s i n P e di at r i c s 14 1 55.

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61 W i gr e n, M & H e i m a nn M ( 2001) E xc e s s i ve pi c ki ng i n P r a de r W i l l i s yndr om e : A p i l ot s t udy of phe nom e nol ogi c a l a s pe c t s a nd c om or bi d s ym pt om s I nt e r nat i onal J our nal of D i s abi l i t y D e v e l opm e nt and E duc at i on 48 129 1 42. W i l s on, D M I w a t a B A & B l oom S E ( i n p r e s s ) E va l ua t i on of a c om put e r a s s i s t e d t e c hni que f or m e a s ur i ng i nj ur y s e ve r i t y. J our nal o f A ppl i e d B e hav i or A nal y s i s

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