Marc J. Tassé, PhD AAIDD WEBINAR DSM-5: A Spotlight On Autism Spectrum Disorder and Intellectual Disability December 10, 2013 DSM-5: Diagnosing Intellectual Disability Nisonger Center

American Psychiatric Association Nisonger Center DSM – I: 1952 DSM – II: 1968 DSM–III-R: 1987 DSM – III: 1980 => DSM–III-R: 1987 DSM–IV-TR: 2000 DSM – IV: 1994 => DSM–IV-TR: 2000 DSM – 5: 2013 (12-year process)

DSM-5 (APA, 2013) Development Timeline: : publication « white papers » various topics related to mental disorders : David J. Kupfer and Darrel A. Regier – chair/co-chair => work groups : review of the research literature, analysis of existing datasets, first drafts of chapters, publication of drafts on : clinical trials, analyses of results, revisions 2012: last public consultations, final revisions to drafts 2013:publication of DSM-5 Nisonger Center

DSM-5 Nisonger Center DSM-5 CLASSIFICATION Section I (DSM-5 Basics) Section II (Diagnostic Criteria and Codes) 22 mental disorder categories: Neurodevelopmental Disorders Schizophrenia Spectrum and Other Psychotic Disorders Bipolar and Related Disorders Depressive Disorders …

DSM-5 Nisonger Center DSM-5 CLASSIFICATION Section I (DSM-5 Basics) Section II (Diagnostic Criteria and Codes) 22 mental disorder categories: Neurodevelopmental DisordersNeurodevelopmental Disorders Schizophrenia Spectrum and Other Psychotic Disorders Bipolar and Related Disorders Depressive Disorders … Neurodevelopmental disorders are a group of conditions with onset in the developmental period.

DSM-5 Nisonger Center Neurodevelopmental Disorders Intellectual Disabilities Communication Disorders Autism Spectrum Disorder Attention-Deficit/ Hyperactivity Disorder Specific Learning Disorder Motor Disorders Other Neurodevelop- mental Disorders

Neurodevelopmental Disorders Work Group Nisonger Center Susan Swedo, M.D., National Institute of Mental HealthSusan Swedo, M.D., National Institute of Mental Health *Gillian Baird, M.B., Guy's and St. Thomas' Hospital *Edwin Cook, M.D., University of Illinois at Chicago *Francesca Happé, Ph.D., King's College London James Harris, M.D., Johns Hopkins University Walter Kaufmann, M.D., Harvard University Bryan King, M.D., University of Washington *Catherine Lord, Ph.D., Weill Cornell Medical College *Joseph Piven, M.D., University of North Carolina, Chapel Hill *Sally Rogers, Ph.D., University of California, Davis *Sarah Spence, M.D., Ph.D., Harvard University *Amy Wetherby, Ph.D., Florida State University *Harry Wright, M.D., University of South Carolina

DSM-5 Nisonger Center Neurodevelopmental Disorders Intellectual Disabilities Communication Disorders Autism Spectrum Disorder Attention-Deficit/ Hyperactivity Disorder Specific Learning Disorder Motor Disorders Other Neurodevelop- mental Disorders

DSM-5 Nisonger Center Neurodevelopmental Disorders Intellectual Disabilities Intellectual Disability Global Developmental Delay Unspecified Intellectual Disability Communication Disorders Autism Spectrum Disorder Attention-Deficit/ Hyperactivity Disorder Specific Learning Disorder Motor Disorders Other Neurodevelop- mental Disorders

DSM-5 Nisonger Center Neurodevelopmental Disorders Intellectual Disabilities Intellectual Disability Global Developmental Delay Unspecified Intellectual Disability Communication Disorders Autism Spectrum Disorder Attention-Deficit/ Hyperactivity Disorder Specific Learning Disorder Motor Disorders Other Neurodevelop- mental Disorders

DSM-5 Nisonger Center Intellectual Developmental Disorder 319. Intellectual Disability (Intellectual Developmental Disorder) [ICD-11] “… is a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains.“ - DSM-5, page 33

DSM-5 Nisonger Center 319. Intellectual Disability (Intellectual Developmental Disorder) Intellectual Developmental Disorders Intellectual Disability “Note: The diagnostic term Intellectual Disability is the equivalent term for the ICD-11 diagnosis of Intellectual Developmental Disorders. Although the term Intellectual Disability is used throughout this manual, both terms are used in the title to clarify relationships with other classification systems. Moreover, a federal statute in the United States (Public Law , Rosa’s law) replaces the term mental retardation with intellectual disability, and research journals use the term Intellectual Disability. Thus, Intellectual Disability is the term in common use by medical, educational, and other professions, and by the lay public and advocacy groups.” - DSM-5, p. 33

DSM-5 Nisonger Center 319. Intellectual Disability (Intellectual Developmental Disorder) Intellectual Disability “Note: The diagnostic term Intellectual Disability is the equivalent term for the ICD-11 diagnosis of Intellectual Developmental Disorders. Although the term Intellectual Disability is used throughout this manual, both terms are used in the title to clarify relationships with other classification systems.. Moreover, a federal statute in the United States (Public Law , Rosa’s law) replaces the term mental retardation with intellectual disability, and research journals use the term Intellectual Disability. Thus, Intellectual Disability is the term in common use by medical, educational, and other professions, and by the lay public and advocacy groups.” - DSM-5, p. 33

ICD-11 (WHO, in preparation) Intellectual Developmental Disorders Disorders of intellectual development “Disorders of intellectual development refer to a group of etiologically diverse conditions originating during the developmental period characterized by significantly below average intellectual functioning and adaptive behavior that is approximately two or more standard deviations below the mean (≈<2.3 percentile), as established based on appropriately normed, standardized tests or by comparable clinical indicators when standardized testing is unavailable. …” Nisonger Center

DSM Intellectual Disability (Intellectual Developmental Disorder) “… is a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains.“ - APA, 2013, p. 33 AAIDD Intellectual Disability “… is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. The disability originates before age 18.“ - Schalock et al., 2010, p. 1

DSM-5 Nisonger Center 319. Intellectual Disability (Intellectual Developmental Disorder) three criteria The following three criteria must be met: A.Deficits in intellectual functions, such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experience, and practical understanding confirmed by both clinical assessment and individualized, standardized intelligence testing. - DSM-5, p. 33

Nisonger Center Diagnostic Features (p. 37) Criterion A refers to Criterion A refers to intellectual functions … intellectual functioning is typically measured with individually administered and psychometrically valid, comprehensive, culturally appropriate, psychometrically sound tests of intelligence. … two standard deviations or more below the population mean, including a margin of measurement error (generally + 5 points) … a score of 65 – 75 (70 ± 5). Factors that may affect test scores include practice effects and the “Flynn effect”…. Intellectual Disability

Nisonger Center Diagnostic Features (p. 37) Criterion A refers to practice effects Flynn effect Criterion A refers to intellectual functions … intellectual functioning is typically measured with individually administered and psychometrically valid, comprehensive, culturally appropriate, psychometrically sound tests of intelligence. … two standard deviations or more below the population mean, including a margin of measurement error (generally + 5 points) … a score of 65 – 75 (70 ± 5). Factors that may affect test scores include practice effects and the “Flynn effect”…. Intellectual Disability

Nisonger Center ”IQ test scores are approximations of conceptual functioning but may be insufficient to assess reasoning in real-life situations and mastery of practical tasks. For example, a person with an IQ score above 70 may have such severe adaptive behavior problems in social judgment, social understanding, and other areas of adaptive functioning that the person’s actual functioning is comparable to that of individuals with a lower IQ score. Thus, clinical judgment is needed in interpreting the results of IQ tests.” Intellectual Functioning - DSM-5, p. 37

DSM-5 Nisonger Center 319. Intellectual Disability (Intellectual Developmental Disorder) communication social participationindependent livingacross multiple environments, such as home, school, work, and recreation B.Deficits in adaptive functioning that result in failure to meet developmental and sociocultural standards for personal independence and social responsibility. Without ongoing support, the adaptive deficits limit functioning in one or more activities of daily life, such as communication, social participation, and independent living, and across multiple environments, such as home, school, work, and recreation. - DSM-5, p. 33

Intellectual Disability Nisonger Center Diagnostic Features (p. 37 & 38) Criterion B – adaptive functioningadaptive reasoning ONE domain assessed using both clinical evaluation and individualized, culturally appropriate, psychometrically sound measures Criterion B – adaptive functioning involves adaptive reasoning, in three domains: conceptual, social, and practical. … criterion B is met when at least ONE domain of adaptive functioning, conceptual, social or practical is sufficiently impaired that ongoing support is needed…. Adaptive functioning is assessed using both clinical evaluation and individualized, culturally appropriate, psychometrically sound measures. Standardized measures are used with knowledgeable informants (e.g., parent or other family member, teacher, counselor, care provider) and the individual to the extent possible.

Intellectual Disability Nisonger Center Diagnostic Features (p. 37 & 38) Criterion B – adaptive functioningadaptive reasoning assessed using both clinical evaluation and individualized, culturally appropriate, psychometrically sound measures Criterion B – adaptive functioning involves adaptive reasoning, in three domains: conceptual, social, and practical. … criterion B is met when at least ONE domain of adaptive functioning, conceptual, social or practical is sufficiently impaired that ongoing support is needed…. Adaptive functioning is assessed using both clinical evaluation and individualized, culturally appropriate, psychometrically sound measures. Standardized measures are used with knowledgeable informants (e.g., parent or other family member, teacher, counselor, care provider) and the individual to the extent possible.

Intellectual Disability Nisonger Center Diagnostic Features (p. 37 & 38) Criterion B – adaptive functioning “Additional sources of information include educational, developmental, medical, and mental health evaluations. Scores from standardized measures and interview sources must be interpreted using clinical judgment.” “Adaptive functioning may be difficult to assess in a controlled setting (e.g., prisons, detention centers); if possible corroborative information reflecting functioning OUTSIDE those settings should be obtained.”

Intellectual Disability Nisonger Center Diagnostic Features (p. 37 & 38) Criterion B – adaptive functioning “Additional sources of information include educational, developmental, medical, and mental health evaluations. Scores from standardized measures and interview sources must be interpreted sing clinical judgment.” “Adaptive functioning may be difficult to assess in a controlled setting (e.g., prisons, detention centers); if possible corroborative information reflecting functioning OUTSIDE those settings should be obtained.”

Intellectual Disability Nisonger Center Diagnostic Features (p. 38) Criterion B – adaptive functioning must be directly related to the intellectual impairments “To meet diagnostic criteria for ID, the deficits in adaptive functioning must be directly related to the intellectual impairments described in Criterion A.”

DSM-5 Nisonger Center 319. Intellectual Disability (Intellectual Developmental Disorder) C.Onset of intellectual and adaptive deficits during the developmental period. “Criterion C, onset during the developmental period, refers to recognition that intellectual and adaptive deficits are present during the childhood or adolescence.” - DSM-5, p DSM-5, p. 38

DSM-5 Nisonger Center S PECIFIERS specifiers The use of specifiers for the neurodevelopmental disorder diagnoses enriches the clinical description of the individual’s clinical course and current symptomatology. age of onset severity level of ID … associated with a medical (e.g., seizure disorder) … etiology: genetic condition (e.g., trisomy 21) or environmental factor (e.g., low birth weight)

Nisonger Center Intellectual Disability S PECIFIER - C URRENT S EVERITY OF ID: severity levels of IDadaptive functioningnot IQ scores The severity levels of ID are defined on the basis of adaptive functioning, and not IQ scores, because it is adaptive functioning that determines the level of supports required. Moreover, IQ measures are less valid in the lower end of the IQ range. Severity levels of ID: Mild, Moderate, Severe, & Profound. - DSM-5, p. 33

Nisonger Center Intellectual Disability S EVERITY L EVELS FOR I NTELLECTUAL D ISABILITY : Severity Conceptual Domain Social Domain Practical Domain Mild Moderate Severe Profound - DSM-5, p

Nisonger Center Similarities and Differences

Nisonger Center DSM-5-AAIDD: Similarities and Differences. Same: Name “intellectual disability” Same:Intelligence => IQ criterion Same:AB domains Intellectual Disability DSM-5 (p. 40): “the AAIDD also uses the term intellectual disability with a similar meaning to the term used in this manual.”

Nisonger Center DSM-5-AAIDD: Similarities and Differences. Same: Name “intellectual disability” Same:IQ “< 2 standard deviations below the mean” Same:AB domains ???: Age of onset Intellectual Disability

Nisonger Center DSM-5-AAIDD: Similarities and Differences. Same: Name “intellectual disability” Same:IQ Same:AB domains ???: Age of onset Different: Severity levels Different: Operational definition of “significant deficits” in AB Different:Link AB deficits to IQ Intellectual Disability

Jarrett Barnhill, MD, DFAPA, FAACAP AAIDD WEBINAR DSM-5: A Spotlight On Autism Spectrum Disorder and Intellectual Disability December 10, 2013 DSM-5: Diagnosing Autism Spectrum Disorder