Presentation on theme: "The PDD Behavior Inventory (PDDBI)*"— Presentation transcript:
1 The PDD Behavior Inventory (PDDBI)* Ira L. Cohen, Ph.D.Chairman, Psychology Dept.NYS IBR/DD*Cohen and Sudhalter (2005)Psychological Assessment Resources, Inc.
2 PDD Behavior Inventory (PDDBI) Cohen, I.L., Schmidt-Lackner, S., Romanczyk, R., and Sudhalter, V. (2003). The PDD Behavior Inventory: A rating scale for assessing response to intervention in children with PDD. Journal of Autism and Developmental Disorders, 33(1),Cohen, I.L. (2003). Criterion-related validity of the PDD Behavior Inventory. Journal of Autism and Developmental Disorders, 33(1),Cohen, I.L., and Sudhalter, V. (2005). The PDD Behavior Inventory. Lutz, Fl: Psychological Assessment Resources, Inc.
3 Goals of WorkshopUnderstanding why the PDDBI was developed and it’s usesLearning about autism and the related PDDsLearning about administration and scoring of the PDDBILearning about the reliability and validity of the PDDBILearning about interpretation of PDDBI score profiles and score discrepancies and their implications for diagnosis and intervention
4 Why was the PDDBI Developed? I had clinical and research questions that could not easily be answered with rating scales developed to assess autismChildren’s Psychiatric Rating ScaleChildhood Autism Rating ScaleAutism Behavioral ChecklistBehavioral Summarized Evaluation scaleGlobal Impression-Type Scales (CGI)Gilliam Autism Rating ScaleAutism Diagnostic Interview-RevisedAutism Diagnostic Observation Schedule-Generic
5 Clinical QuestionsWhen a child with autism shows “challenging behaviors”Is it because he or she has autism? (i.e., other children with autism show similar problems at the same level of intensity)Is something else going on? (i.e., child’s behavior is beyond what we would expect or is restricted to certain settings)But there’s a problemAssessment tools for autism are not standardized on children with autismAssessment tools for autism are not standardized on different types of informants
6 Research/Clinical Questions When a child is treated with medication and repetitive behaviors decreaseIs there also an improvement in social communication skills?Is there a decrease in social communication skills?But there’s a problemMost assessment tools for autism don’t assess the social communication skills that are important in distinguishing children with autism from typically developing childrenInstead, they emphasize their problems with communicationNone are standardized on well-diagnosed samples and none are age-normed
7 Clinical QuestionsWhen a child with autism has difficulty communicatingIs it because he or she has autism? (i.e., other children with autism show similar problems at the same skills level)Is something else going on? (i.e., child’s communication is much worse than we would expect or is restricted to certain settings)But there’s a problemAssessment tools for autism are not age-standardized on children with autismAssessment tools for autism are not standardized on different types of informants
8 Problems with Existing Assessment Tools Except for the ADI-R and ADOS-G, all of the assessment tools focus exclusively on problem behaviors and do not reflect current research on behaviors that differentiate children with autism from other groupsNone of the assessment tools are age-normedOnly one provides standard scores (GARS) but the diagnostic criteria defining the standardization sample are poorly describedExcept for the ADI-R and ADOS-G, all focus on behavior problems seen in the more severely affected casesNone of the assessment tools are tailored to inputs from teachers/therapists (important for assessing generalization)
9 PDD Behavior Inventory (PDDBI) The PDDBI can be used to assess response to intervention, assist in diagnosis and treatment planning, and help with researchIt:Assesses both problem behaviors and appropriate social communication behaviors (important in assessing improvement)Is age-normed (because there is a need to assess change due to age from that due to treatment)Includes items that are based on the latest research on behaviors that discriminate autism from other conditionsIs standardized on a well-diagnosed autism sample
10 Uses of the PDDBI Clinical Educational Research Assisting in Diagnosis and Treatment RecommendationsMonitoring Changes at Follow-Ups, etc.EducationalAssisting in Placement DecisionsAssisting in Treatment PlanningMonitoring Students’ Progress, etc.ResearchMeasuring Response to Novel TreatmentsIdentifying Meaningful Sub-GroupsAssessing (Endo)phenotypes in Genetic Studies, etc.
11 Assisting in Diagnosis Does the child’s profile of domain scores look like someone his/her age with autism?Is the profile consistent with your observations?Does the profile suggest an alternate and/or “co-morbid” diagnosis that needs to be considered (diagnostic overshadowing?)?Do the domain profiles of parent and “teacher” agree?If not, which scores differ?If they differ, does this say something about diagnosis (e.g., Selective Mutism)?
12 Assisting in Placement Decisions Is the child’s problem behavior profile typical of someone his/her age with autism?If not, are some scores so high that a special treatment setting may be necessary?
13 Treatment PlanningIs the child’s “social-communication” behavior profile typical of someone his/her age with autism?If not, do domain scores suggest some other diagnosis should be considered, e.g., Asperger’s?
14 ResearchThe PDDBI can be helpful and is being used for measuring meaningful change as a result of intervention (e.g., medication, ABA, dietary, etc.) for people in the autism spectrumFor groups (e.g., Are people in my school improving?; Is my intervention associated with improvement?)For individuals (Has this person improved?)If so, in what areas?If so, is it a meaningful decrease in autism traits?It is also being used in large scale genetics studies to identify genes associated with certain types of autistic behaviors
15 Some Research Programs Using PDDBI Arizona State UniversityArkansas Children’s Hospital Research UnitASD-Canadian American Research ConsortiumBaylor College of MedicineBinghamton UniversityCarlos Albizu UniversityCleveland Clinic Center for AutismColumbia University - Psychiatric InstituteMassachusetts General HospitalM.I.N.D. InstituteMount Sinai Hospital – Seaver Center (Manhattan)National Institute of Mental Health (NIMH)Ohio State UniversityRoyal Prince Alfred Hospital, Sydney, AustraliaSt. Mary’s Hospital (Wisconsin)University of California San DiegoUniversity of IllinoisUniversity of North Carolina – Chapel HillWashington State University
16 PDDBIAs will be shown, we have found the PDDBI to be both reliable and validIt can be used for assessing children on the autism spectrum who are between 18 months and 12-1/2 years of age
20 Earliest Description of Autism? “If a woman gives birth and the infant rejects the mother”Summa Izbu IV 42Ancient Mesopotamian medical text (translated by M. Coleman, M.D.)
21 Leo Kanner’s Observations (1943) (Kanner, L Leo Kanner’s Observations (1943) (Kanner, L. Autistic disturbances of affective contact. Nervous Child, 2, ) Sample: 8 boys; 3 girls“inability to relate themselves in the ordinary way to people and situations from the beginning of life”Of 8 speaking children, none used language to convey meaningecholalia and delayed echolaliaaffirmation by repetitionliteralness“personal pronouns are repeated as heard”
22 Kanner’s Observations (continued) Excellent rote memories“all powerful need for being left undisturbed”loud noises and moving objects reacted to with horror“anxiously obsessive desires for the maintenance of sameness”routinesfurniture arrangements
23 Kanner’s Observations (continued) Monotonous and repetitive motions and verbal utterancesGood relation to objects - not to people“intelligent physiognomies”
24 Modern Descriptions of Autism Kanner (1943)British Working Party (1963)Rimland (E-1 and E-2 Scales) (1964)Rutter (1972)Ritvo and Freeman (NSAC) (1977)DSM III (First use of “PDD” term) (1980)DSM-III-R (1987)DSM-IV (1994)
25 Diagnostic History of PDD DSM III (1980)Pervasive Developmental DisorderInfantile AutismChildhood Onset Pervasive Developmental DisorderAtypical Pervasive Developmental DisorderDSM III-R (1987)Autistic DisorderPervasive Developmental Disorder - NOS
26 Current Nosology DSM-IV (1994) All represent the autism “spectrum” Pervasive Developmental DisorderAutistic DisorderChildhood Disintegrative DisorderRett’s DisorderAsperger’s DisorderPervasive Developmental Disorder NOSAll represent the autism “spectrum”
27 Autistic Disorder (DSM-IV) 1) Qualitative impairment in social interaction (Problems with eye contact, facial expression, body posture, gestures, peer relationships, sharing interests, emotional reciprocity)2) Qualitative impairments in communication (Delay or lack of language, problems with conversational desire/skill, stereotyped language, problems with social and imaginative play)3) Restricted repetitive and stereotyped patterns of behavior, interests and activities (Preoccupations, inflexible adherence to routines or rituals, stereotyped movements, preoccupation with parts of objects)4) Onset prior to 3 years; Not Rett’s or Disintegrative
29 “Co-morbid” Features “Anxiety” Problems and Anxiety Disorders Hyperactivity CommonSleeping, Eating, and, sometimes, GI Disturbances“Incongruous” Mood States and Mood DisordersSelf-Injurious Behaviors Sometimes SeenSavant Skills in Small PercentageTics Sometimes SeenEpilepsy in 30% to 40% by adulthoodGenetic Syndromes
30 PDD-NOS Also known as “Atypical Autism” Criteria not met for one of the other PDDs due to age of onset, or atypical symptoms, or sub-threshold symptoms or all of theseThere is severe and pervasive impairment in development of reciprocal social interaction skills and impairment in communication skills OR presence of stereotyped behaviors, interests, and activities
31 ?Asperger’s DisorderSame characteristics as Autistic Disorder, but:No general language delay (single words by 2 years; communicative phrases by 3 years)No delay in cognitive development or self-help skills or curiosity about the environmentNot other PDD or schizophrenia“Jerry Espenson”“Boston Legal”?
32 Rett’s Disorder Normal pre- and peri-natal development Normal psychomotor development up to 5 mos.Normal HC at birth-HC deceleration 5-48 mos.Loss of purposeful hand skills (hand wringing)Loss of social engagementPoorly coordinated gait and trunk movementsSevere language disorder and retardationBreathing abnormalities commonDue to MECP2 gene mutation absence of MECP2 protein absence of gene suppression“Leaky genes”
33 Childhood Disintegrative Disorder Normal development first 2 yearsLoss of skills before 10 years in at least 2:Expressive or receptive languageSocial or adaptive skillsBowel/bladder controlPlayMotor skillsAbnormalities in at least 2:Qualitative social interactionQualitative impairment in communicationRepetitive behaviors, restricted interestsNot other PDD or schizophrenia
34 Differential Diagnosis Issues Receptive-Expressive Language DisorderMental Retardation without PDDADHDDeafness/Hearing ImpairmentSelective MutismReactive Attachment Disorder
35 Autism/PDD-NOS Characteristics Most are males (about 75%-50%)Developmental delay is common (about 70%)Parents recognize problems around 18 months, sometimes with loss of skillsEnlarged head circumference sometimes seen in younger children (about 37%)Genes play a strong role in etiology
36 Autisms (Disorders/Syndromes) What Causes Autism?GeneticKnown/UnknownPre/Post-Natal Brain Development/FunctionAutisms (Disorders/Syndromes)(Autism is an etiologically heterogeneous disorder, as is the case with mental retardation)Pre/Post-Natal Environment(viruses, hormones, neurotransmitters, etc.)
37 Known Genetic Conditions Associated With Autism Fragile X SyndromeAbout 2 to 8 % in males or females with autismAbout 15 % of fragile X males have autismOther Genetic Disorders/ConditionsUntreated Phenylketonuria (PKU)Tuberous Sclerosis in about 3% of casesAngelman’s SyndromeChromosome 15q11-13 Duplications (maternal origin) (Cook, et al., 1997) - Same region as Prader-Willi (maternal) and Angelman’s (paternal) Deletion Syndromes
38 Genetics of Autism Twin studies (Bailey, et al 1995) 60% concordance for autism in 25 MZ twins; None in DZ92% concordance for cognitive impairment in MZ twins; 10% in DZ twins
39 The Broader Phenotype Autism, per se, may not be inherited Rather, there appears to be a Spectrum of social and language problems inherited in some families.
40 Genetic Factors in Autism Family StudiesRisk of Autism in siblings of proband 5% to 9%Risk of Autism itself in the population: about 0.5%Risk of Asperger’s or PDDNOS in siblings ~ 3%Risk of other social or communication impairments or restricted interests ~20% in siblingsRisk of Mood Disorders is elevated in family (siblings, parents, extended family)
43 Other Medical IssuesThere is very little evidence for the role of the following in causing autism:Heavy metals such as mercuryVaccines such as MMR and DPTGastro-intestinal problemsMany of these issues are currently being investigated at various centersThe role of immune system problems and CNS inflammation in autism are also major questions
44 Oxidative Stress Problems in Autism? Levels of transferrin and ceruloplasmin (antioxidants) are lower in children with autism who lost skills relative to sibs
46 AdministrationCan be completed at home, school, or clinician’s office (should be free from distractions)Ensure confidentiality in reportingClinician should indicate with an X or check mark whether informant is to complete standard or extended formStandard: if primary concern is with autism diagnosis-related behaviors (e.g., prevalence studies)Extended: if concern is with autism behaviors and more generic behavior issues
47 General Issues in Administration Give an estimate of amount of time needed to complete the PDDBI (about minutes depending on standard or extended form)Review scoring for:Question marks (review item with respondent)Missing responses or multiple responsesMissing dates (birth dates and current date)
48 PDDBI Domains Domains were conceptually organized as follows: Approach/Withdrawal DimensionSocial Communication SkillsDomains assess behaviors important for autism (Standard Form) and for associated behavior problems that are not unique to autism (Extended Form)Different versions were created for parents and teachers (a generic term that includes teachers, speech therapists, aides, ABA instructors, etc.)
50 Domains and Item Scoring A “nested approach” was used for each domainEach domain in the PDDBI is made up of a subset of different “clusters”For example, the Sensory/Perceptual Approach Behaviors domain has 5 clusters in the parent version tapping a variety of repetitive behaviorsEach cluster consists of 4 or more exemplars and each is rated on a Likert scale with the following options:0 (Does Not Show Behavior); 1 (Rarely Shows Behavior);2 (Sometimes/Partially Shows Behavior);3 (Usually/Typically Shows Behavior); and ? (Don’t Understand)Each domain is scored (the raw score) by summing the ratings, taking missing items into accountStandard scores are computed from the tables and entered on the Summary Sheet
51 PDD Behavior Inventory (PDDBI) Scoring System (T-Scores) Each domain and composite was age-normed and according to a T-score system (mean=50; SD=10)The higher the T-scores for the “Approach-Withdrawal” domains and the Autism Composite Score, the more “severe” or discrepant that child’s scores are from the average child with autismThe higher the T-score for the “Receptive/Expressive Social Communication Abilities” domains, the better that child’s skills are relative to the average child with autism
57 Test Materials Parent Form (PDDBI-P; PDDBI-PX*) PDDBI-P (124 Items)PDDBI-PX (188 items)Teacher Form (PDDBI-T; PDDBI-TX*)PDDBI-T (124 Items)PDDBI-TX (180 items) Score Summary SheetsProfile Forms(PDDBI-SP – software)X=Extended (if concern is with autism behaviors and with more generic behavior issues)
58 Appropriate Populations Any child with a Pervasive Developmental DisorderAges 18 months through 12 years, 5 monthsEnglish speaking informantsFlesch-Kincaid Reading Level – Grade 4.7Gunning Fog Index – 7.8 (“Reader’s Digest” level)
59 Selecting Raters Parent Teacher Parent or legal guardian with the most recent and frequent contact over the previous 6 months (ideally both parents)TeacherTeacher or other professional (speech therapist; teacher’s aide, etc.) must have had at least daily contact for at least one month or more than 4 weeks of several days per week contact
61 Approach-Withdrawal Problems Clusters (Repetitive, Ritualistic & Pragmatic Problems) Ritualisms/Resistance to Change (RITUAL)Resistance to Change in the EnvironmentResistance to Change in Schedules/RoutinesRitualsSocial Pragmatic Problems (SOCPP)Problems with Social ApproachSocial Awareness ProblemsInappropriate Reactions to the Approaches of Others
62 Approach-Withdrawal Problems Clusters (Repetitive, Ritualistic & Pragmatic Problems) Semantic/Pragmatic Problems (SEMPP)Aberrant Vocal Quality When SpeakingProblems with Understanding Words (e.g., echolalia)Verbal Pragmatic Deficits (e.g., problems with conversations or perseverative language)
63 Approach-Withdrawal Problems Clusters Arousal Regulation Problems (AROUSE)Kinesthetic BehaviorsReduced ResponsivenessSleep Regulation Problems (PDDBI-P)Specific Fears (FEARS)Sadness When Away From Caregiver…(PDDBI-P)Anxiousness When Away From Caregiver…(PDDBI-P)Auditory Withdrawal BehaviorsFears and AnxietiesSocial Withdrawal Behaviors
64 Approach-Withdrawal Problems Clusters Aggressiveness (AGG)Self-Directed Aggressive BehaviorsIncongruous Negative AffectProblems when Caregiver…Returns from an Outing or VacationAggressiveness Toward OthersOverall Temperament Problems
65 (Receptive)/Expressive Communication Skills Clusters Social Approach Behaviors (SOCAPP)Visual Social Approach BehaviorsPositive Affect BehaviorsGestural Approach BehaviorsResponsiveness to Social Inhibition CuesSocial Play BehaviorsImaginative Play BehaviorsEmpathy BehaviorsSocial Imitative BehaviorsSocial Interaction Behaviors (PDDBI-P)
66 (Receptive)/Expressive Communication Skills Clusters Expressive Language (EXPRESS)Vowel ProductionConsonant ProductionDiphthong ProductionExpressive Language CompetenceVerbal Affective TonePragmatic Conversational Skills
67 Receptive/Expressive Communication Skills Clusters Learning, Memory, and Receptive Language (LMRL)General Memory SkillsReceptive Language CompetenceAssociative Learning (PDDBI-T)
68 Composite Scores Approach-Withdrawal Problems (AWP) Repetitive, Ritualistic & Pragmatic Problems (REPRIT)Receptive/Expressive Social Communication Skills (REXSCA)Expressive Social Communication Skills (EXSCA)Autism(SENSORY+RITUAL+SOCPP+SEMPP) –(SOCAPP + EXPRESS)
99 PDDBI ProfilesFor clinical and research purposes, it is important to examine the overall profile of scores, as well as the magnitude of the composite scores, for both parent and teacher observationsSuch profiles can provide important information about the child, and identify behaviorally-defined sub-groupsRemember that the PDDBI is standardized on an autism sample.
100 Case 1 - Michael Visit 1 (23 months of age): VinelandCommunication – 6 monthsSocialization – 11 monthsMotor Skills – 23 monthsADOS-G: AutismVisit 2 (28 months of age; After 25 hrs/wk of ABA and O.T.):Communication – 21 monthsSocialization – 20 monthsMotor Skills – 28 monthsADOS-G: Autism Spectrum Disorder
101 Kinesthetic Behaviors Reduced ResponsivenessSleep Regulation ProblemsModerateVery High
104 Case 4 - Albert IQ (SB-5): 103 Vineland: Communication: 89 Daily Living Skills: 60Socialization: 59Extreme anxiety noted on first observationHistory of aggressiveness as presenting problem with PDDPositive family history for anxiety and depressionMedication:Visit 1. 5 years, 11 months of age - DextroamphetamineVisit 2. 7 years of age - Olanzapine (Zyprexa) – became manic on an SSRI with d-amphetamineFinal Diagnoses: BP II; Social Anxiety Disorder; Asperger’s Disorder
109 Ted’s Cluster Scores Inappropriate Reactions.. Others Very High SOCPPInappropriate Reactions.. OthersVery HighVerbal Pragmatic DeficitsVisual Social ApproachPositive AffectGestural ApproachImaginative PlayEmpathyHighSocial ImitativeSocial InteractionModerateSocial PlayLowSEMPPSOCAPP
110 Case 6 - Huda Girl, age 3 years, 2 months Rett’s Disorder Vineland: Communication: 43Daily Living Skills: 42Socialization: 50Motor Skills: 39ADOS-G: Autism
111 Rett’s Disorder Normal pre- and peri-natal development Normal psychomotor development up to 5 mos.Normal HC at birth-HC deceleration 5-48 mos.Loss of purposeful hand skills (hand wringing)Loss of social engagementPoorly coordinated gait and trunk movementsSevere language disorder and retardationBreathing abnormalities commonDue to MECP2 gene mutation absence of MECP2 protein absence of gene suppression“Leaky genes”
113 Case 7: JM 4 year, 10 month old boy with Costello Syndrome Grand mal at 3 months of age – stopped breathingCurrently petit mal seizuresTested positive for autism on the ADOS-GParent report data provided by Dr. G. Hintz (Wisconsin)
114 Costello Syndrome Rare multi-organ disorder of unknown etiology Physical characteristicsGrowth delayShort statureExcessive skin on neck, palms, fingers, solesCharacteristic facial appearanceMacrocephalyLow set earsThick ear lobes and lips, wide nostrilsCognitive delayBehavior – “Warm, sociable, and humorous”
118 Discriminating PDD from Non-PDD Cases PDD (n=475) vs. Not PDD (n=50; language impaired, emotional problems, typically developing, etc.) - PDDBI-P Autism CompositeArea under curve=0.90 (+/- .023); 95% CI:
119 SummaryThe PDDBI is a new reliable and valid tool for measuring treatment effects; assisting in diagnosis, placement, and treatment planning; and analyzing behavioral sub-groupsIt is sensitive to shifts in diagnostic statusIt correlates well with other measures of autism and adaptive skills
120 PPV and NPV Sensitivity and Specificity=90% Actual PDDActual Not PDDPPV and NPV %Test Positive for PDD9010Test Negative for PDDBase rate N100
121 PPV and NPV Sensitivity and Specificity=90% Actual PDDActual Not PDDPPV and NPV %Test Positive for PDD90199Test Negative for PDD10947Base rate N100
122 PPV and NPV Sensitivity and Specificity=90% Actual PDDActual Not PDDPPV and NPV %Test Positive for PDD91008Test Negative for PDD190099Base rate N101000