The PDD Behavior Inventory (PDDBI)*

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. Presented by: Jim Gyurke, PhD, Vice-President of Marketing and Sales PAR, Inc. • Hospital Based Developmental Psychologist at two University teaching Hospitals • CDC Consultant for Infant Nutrition and IQ Study • Adjunct Faculty in School Psychology, Trinity University • Jgyurke@parinc.com

3. 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), 31-45. Cohen, I.L. (2003). Criterion-related validity of the PDD Behavior Inventory.Journal of Autism and Developmental Disorders, 33(1), 47-53. Cohen, I.L., and Sudhalter, V. (2005). The PDD Behavior Inventory. Lutz, Fl: Psychological Assessment Resources, Inc.

4. Goals of Workshop • Understanding of why the PDDBI was developed and it’s uses • Learning about autism and the related PDDs • Learning about administration and scoring of the PDDBI • Learning about the reliability and validity of the PDDBI • Learning about interpretation of PDDBI score profiles and score discrepancies and their implications for diagnosis and intervention

5. Why was the PDDBI Developed? • The authors had clinical and research questions that could not easily be answered with rating scales developed to assess autism • Children’s Psychiatric Rating Scale • Childhood Autism Rating Scale • Autism Behavioral Checklist • Behavioral Summarized Evaluation scale • Global Impression-Type Scales (CGI) • Gilliam Autism Rating Scale • Autism Diagnostic Interview-Revised • Autism Diagnostic Observation Schedule-Generic

6. 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 groups • None of the assessment tools are age-normed • Only one provides standard scores (GARS) but the diagnostic criteria defining the standardization sample are poorly described • Except for the ADI-R and ADOS-G, all focus on behavior problems seen in the more severely affected cases • None of the assessment tools are tailored to inputs from teachers/therapists (important for assessing generalization)

7. Clinical Questions When 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 problem • Assessment tools for autism are not standardized on children with autism • Assessment tools for autism are not standardized on different types of informants

8. Research/Clinical Questions When a child is treated with medication and repetitive behaviors decrease. . . . . • Is there also an improvement in social communication skills? • Is there a decrease in social communication skills? But there’s a problem • Most assessment tools for autism don’t assess the social communication skills that are important in distinguishing children with autism from typically developing children • Instead, they emphasize the child’s problems with communication • None are standardized on well-diagnosed samples and none are age-normed

9. Clinical Questions • When a child with autism has difficulty communicating. . . . • Is 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 problem • Assessment tools for autism are not age-standardized on children with autism • Assessment tools for autism are not standardized on different types of informants

10. PDD Behavior Inventory (PDDBI) • The PDDBI can be used to assess response to intervention, assist in diagnosis and treatment planning, and help with research • It: • 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 conditions • Is standardized on a well-diagnosed autism sample

11. Uses of the PDDBI • Clinical • Assisting in Diagnosis and Treatment Recommendations • Monitoring Changes at Follow-Ups, etc. • Educational • Assisting in Placement Decisions • Assisting in Treatment Planning • Monitoring Students’ Progress, etc. • Research • Measuring Response to Novel Treatments • Identifying Meaningful Sub-Groups • Assessing (Endo)phenotypes in Genetic Studies, etc.

12. 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)?

13. 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?

14. Treatment Planning • Is 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?

15. Research • The 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 spectrum • For 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

16. Some Research Programs Using PDDBI • Arizona State University • Arkansas Children’s Hospital Research Unit • ASD-Canadian American Research Consortium • Baylor College of Medicine • Binghamton University • Carlos Albizu University • Cleveland Clinic Center for Autism • Columbia University - Psychiatric Institute • Massachusetts General Hospital • M.I.N.D. Institute • Mount Sinai Hospital – Seaver Center (Manhattan) • National Institute of Mental Health (NIMH) • Ohio State University • Royal Prince Alfred Hospital, Sydney, Australia • St. Mary’s Hospital (Wisconsin) • University of California San Diego • University of Illinois • University of North Carolina – Chapel Hill • Washington State University

17. PDDBI • As will be shown, we have found the PDDBI to be both reliable and valid • It can be used for assessing children on the autism spectrum who are between 18 months and 12-1/2 years of age

18. Autism and the Related PDDs

19. Earliest Description of Autism? “If a woman gives birth and the infant rejects the mother” Summa Izbu IV 42 Ancient Mesopotamian medical text (translated by M. Coleman, M.D.)

20. Leo Kanner’s Observations (1943)(Kanner, L. Autistic disturbances of affective contact. Nervous Child, 2, 217-250.)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 meaning • echolalia and delayed echolalia • affirmation by repetition • literalness • “personal pronouns are repeated as heard”

21. 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” • routines • furniture arrangements

22. Kanner’s Observations (continued) • Monotonous and repetitive motions and verbal utterances • Good relation to objects - not to people • “intelligent physiognomies”

23. 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)

24. Diagnostic History of PDD • DSM III (1980) • Pervasive Developmental Disorder • Infantile Autism • Childhood Onset Pervasive Developmental Disorder • Atypical Pervasive Developmental Disorder • DSM III-R (1987) • Pervasive Developmental Disorder • Autistic Disorder • Pervasive Developmental Disorder - NOS

25. Current Nosology • DSM-IV (1994) • Pervasive Developmental Disorder • Autistic Disorder • Childhood Disintegrative Disorder • Rett’s Disorder • Asperger’s Disorder • Pervasive Developmental Disorder NOS • All represent the autism “spectrum”

26. 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 http://news.sie.edu

27. Associated Features • “Anxiety” Problems and Anxiety Disorders • Hyperactivity Common • Sleeping, Eating, and, sometimes, GI Disturbances • “Incongruous” Mood States and Mood Disorders • Self-Injurious Behaviors Sometimes Seen • Savant Skills in Small Percentage • Tics Sometimes Seen • Epilepsy in 30% to 40% by adulthood • Genetic Syndromes

28. 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 these • There 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

29. Asperger’s Disorder (DSM-IV) • Same 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 environment • Not other PDD or schizophrenia

30. 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 engagement • Poorly coordinated gait and trunk movements • Severe language disorder and retardation • Breathing abnormalities common • Due to MECP2 gene mutation  absence of MECP2 protein  absence of gene suppression • “Leaky genes” http://www.rettsyndrome.org.uk

31. Childhood Disintegrative Disorder • Normal development first 2 years • Loss of skills before 10 years in at least 2: • Expressive or receptive language • Social or adaptive skills • Bowel/bladder control • Play • Motor skills • Abnormalities in at least 2: • Qualitative social interaction • Qualitative impairment in communication • Repetitive behaviors, restricted interests • Not other PDD or schizophrenia

32. Differential Diagnosis Issues • Receptive-Expressive Language Disorder • Mental Retardation without PDD • ADHD • Deafness/Hearing Impairment • Selective Mutism • Reactive Attachment Disorder

33. 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 skills • Enlarged head circumference sometimes seen in younger children (about 37%) • Genes play a strong role in etiology

34. What Causes Autism? Genetic Known/Unknown Pre/Post-Natal Brain Development/Function Autisms (Disorders/Syndromes) (Autism is an etiologically heterogeneous disorder, as is the case with mental retardation) Pre/Post-Natal Environment (viruses, hormones, neurotransmitters, etc.)

35. Known Genetic Conditions Associated With Autism • Fragile X Syndrome • About 2 to 8 % in males or females with autism • About 15 % of fragile X males have autism • Other Genetic Disorders/Conditions • Untreated Phenylketonuria (PKU) • Tuberous Sclerosis in about 3% of cases • Angelman’s Syndrome • Chromosome 15q11-13 Duplications (maternal origin) (Cook, et al., 1997) - Same region as Prader-Willi (maternal) and Angelman’s (paternal) Deletion Syndromes

36. Fragile X Syndrome

37. Genetics of Autism • Family Studies • Risk of Autism in siblings of proband 5-9/100 • Risk of Autism itself about 4 to 5 per 10,000 • Risk of Asperger’s or PDDNOS in siblings ~ 3% • Risk of other social or communication impairments or restricted interests ~20% in siblings

38. Genetics of Autism • Twin studies (Bailey, et al 1995) • 60% concordance for autism in 25 MZ twins; None in DZ • 92% 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. Administration and Scoring

41. Administration • Can be completed at home, school, or clinician’s office (should be free from distractions) • Parent or teacher informant • Ensure confidentiality in reporting • Clinician should indicate with an X or check mark whether informant is to complete standard or extended form • Standard: 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

42. General Issues in Administration • Give an estimate of amount of time needed to complete the PDDBI (about 20-45 minutes depending on standard or extended form) • Review scoring for: • Question marks (review item with respondent) • Missing responses or multiple responses • Missing dates (birth dates and current date)

43. General Issues cont’d • Informant must have knowledge of child for at least 1 month, for parents, at least 6 months. • Ideal to get both parents • Missing 2 or more scores within a cluster invalidates cluster. All composites which contain that cluster also become invalid • Clinically important responses/non-responses

44. Appropriate Populations • Any child with a Pervasive Developmental Disorder • Ages 18 months through 12 years, 5 months • English speaking informants • Flesch-Kincaid Reading Level – Grade 4.7 • Gunning Fog Index – 7.8 (“Reader’s Digest” level)

45. PDDBI Domains • Domains were conceptually organized as follows: • Approach/Withdrawal Dimension • Social Communication Skills • Domains 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.)

46. PDD Behavior Inventory (PDDBI) Approach-Withdrawal Problems (Repetitive, Ritualistic & Pragmatic Problems) • Sensory/Perceptual Approach Behaviors • Ritualisms/Resistance to Change • Social Pragmatic Problems • Semantic/Pragmatic Problems • Arousal Regulation Problems • Specific Fears • Aggressiveness • Composite Scores (Receptive)/Expressive Communication Skills • Social Approach Behaviors • Expressive Language • Learning, Memory and Receptive Language • Composite Scores Autism Composite Score

47. Domains and Item Scoring A “nested approach” was used for each domain • Each 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 behaviors • Each 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); 2 (Sometimes/Partially); 3 (Often/Typically); and ? (don’t understand) • Each domain is scored (the raw score) by summing the ratings, taking missing items into account • Standard scores are computed from the tables and entered on the Summary Sheet

49. PDD Behavior Inventory (PDDBI)Scoring System (T-Scores) • Each domain and composite was age-normed and according to a T-score (mean=50; SD=10) system • 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 autism • The 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