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A Personalized Assessment and Treatment Model for Individuals with a Diagnosis of an Autism Spectrum Disorder: Asperger Syndrome November 8, 2013 Raymond.

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Presentation on theme: "A Personalized Assessment and Treatment Model for Individuals with a Diagnosis of an Autism Spectrum Disorder: Asperger Syndrome November 8, 2013 Raymond."— Presentation transcript:

1 A Personalized Assessment and Treatment Model for Individuals with a Diagnosis of an Autism Spectrum Disorder: Asperger Syndrome November 8, 2013 Raymond W. DuCharme, PhD 1 The Learning Clinic November 2013 DO NOT COPY

2 The Learning Clinic November 2013 Personalized/Ecological Treatment Model Cohesive Treatment, Integrated/Personalized DCF Licensed NEASC SDE Approval Clinical Medication Therapy Psycho- Education Residential Living Structure-Performance Independent Living Skills Co-ed Transition Living Skills Community Setting – NE CT Shopping QVCC Working Recreation Home Community 2 DO NOT COPY

3 The Learning Clinic November 2013 Broader Definition, Autism Cases per 10,000 U.S. children More Cases For decades autism was considered rare, perhaps a form of schizo phrenia. Rigorous definition in psychiatric manuals began in 1980 but broadened to autism spectrum disorder by As a result, more and more U.S. children were diagnosed, prompting schools to offer special education, parents to call for better treatments and practitioners to offer an increasingly array of unapproved therapies | o | | | | o | o | | | | | 1943 Autism 1980 Autism first 1987 Category changed to 1990 Autism first tracked 1994 Autistic disorder, popularly defined designated as its own autistic disorder in revised under the Individuals with known as Autism spectrum disorder, category, infantile autism, DSM-III; eight of 16 criteria Disabilities Education Act, is defined more broadly in DSM-IV to in DSM-III (Diagnostic and had to be met for a diagnosis. indicating need for special include syndromes such as Aspergers; Statistical Manual of Mental education. only six diagnostic criteria had to be met. Disorders, third edition). 3 DO NOT COPY

4 The Learning Clinic November 2013 DiagnosisOnset of Symptoms GenderSocial Skills Head Circumference Language Skills Cognitive Functioning Motor Skills Autism Prior to age 3 years. Symptoms in infancy are subtle Males (8 times greater than females) Social skill deficits Delay, or lack of development 75% have mental retardation Repetitive and Stereotyped Retts Disorder Five months normal development; diagnosed between 5-48 months FemalesLoss of social interaction early; may develop later Decelerates between 5-48 months Expressive and receptive language problems Severe to profound retardation Hand- Wringing gait and truck coordination problems Childhood Disintegrati ve Disorder Two years normal development; diagnosed before age 10 Males – more common Loss of social skills (after age 2 years) Expressive or receptive (after age 2 years) Severe mental retardation (usually) Loss of motor skills after age 2 years Asperger Syndrome Recognition and diagnosis later (e.g., school age, between ages 7-11 years) Males (8 times greater than females) Social skill deficits No general delay in language; but pragmatic language deficits. Theory of Mind-Sub vocal Speech Normal IQ Verbal Performance Deviation Motor delays and clumsiness Absence of research PDD, NOS Does no meet criteria for any of the above, but has some of the behaviors 4 DO NOT COPY

5 The Learning Clinic November 2013 Asperger Syndrome Criteria DSM-IVICD-10 Qualitative impairment in social interactionXX Restricted repetitive and stereotyped patterns of behavior, interests, and activities XX No general language delayXX No delay in cognitive developmentXX Normal general intelligence (most)X Markedly clumsy (common)X No delay in development of: age appropriate self-help skills adaptive behavior (excluding social interaction) curiosity about environment X 5 DO NOT COPY

6 The Learning Clinic November 2013 Asperger Syndrome Criteria Pragmatic language skill deficits not part of DSM-IV or ICD-10 criteria but should be included for differential diagnosi s. 6 DO NOT COPY

7 The Learning Clinic November 2013 The lack of a well-defined diagnostic nosology results in questionable validity for research. If there is a continuum of degrees of impairment, developmental delays, and problematic self-regulation for each subtype of Autism, then each subtype needs to be separated for reliable interpretation of research outcomes. Most of the studies I reviewed failed to distinguish between subtypes. The studies bifurcated individuals into two groups High Functioning Autism (HFA) and Low Functioning Autism (LFA) or blended individuals into one group with a typical developing group for comparison. In most cases studies relied on small samples or large groups with small sub-samples of age, sex, and undifferentiated diagnoses. These threats to validity yield concern about the application of findings in treatment. 7 DO NOT COPY

8 The Learning Clinic November 2013 Key question that needs to be resolved prior to treatment planning: Is Autism Spectrum Disorder (ASD) a Phenotype or a Dimensional Structure of Symptoms? Corollary Questions: What is the validity of the separate nosologic types of ASD? (Autism vs. High Functioning Autism vs. PDD-NOS vs. Asperger Syndrome) Are the subtype diagnoses Quantitatively distinct (phenotypes) or Qualitative manifestations of the same disorder? There is no clear empirical data to answer these basic questions at this time. The current trend in the literature is toward the acceptance of the concept of an Autism continuum without empirical support for the concept. 8 DO NOT COPY

9 The Learning Clinic November 2013 Some generalizations may be drawn however: ASD cluster scores in research studies indicate that a diagnosis of ASD and low IQ (< 75) scores will reveal problematic performance on: Theory of Mind (ToM) AttributionTasks Divided Attention Social Skills and Adaptive Behavior composite scores are down by 2 sd (SD=16.9) for this LFA group. The stronger the cognitive make-up measured high IQ scores, the better the scores by individuals on such tasks. Scores for the cluster of ASD did differentiate ASD from other clinical diagnoses, but did not differentiate quantitatively distinct phenotypes: Autism, HFA, PDD-NOS, or Asperger Syndrome. 9 DO NOT COPY

10 The Learning Clinic November 2013 Differential Diagnosis Asperger Syndrome vs. Autism – 75% IQ below 75 Verbal IQ – normal or above Developmental skills delayed Later onset of symptoms throughout development Academic competencies < LD Avoids social contacts specifically Math Early onset of developmental Wants relationships with peers delays Lack of social reciprocity Impaired social judgment Narrow focus of interest Early delayed language Perceived as bright, even development gifted early Long-term support usually Prognosis is positive for IL required Co occurring Diagnoses: Anxiety D/O Depression Oppositional – Defiant D/O LD 10 DO NOT COPY

11 The Learning Clinic November 2013 Neuroatypical Learners What interferes with the student development of educational competencies and cause special needs classification? Neuroatypical factors specifically associated with LD and Autism Spectrum Disorders are discussed in Neurology of Cognitive and Behavior Disorders by Devinsky and DEspisito (2004). 11 DO NOT COPY

12 The Learning Clinic November 2013 Functional brain imaging and electrophysiological studies indicate right brain hemisphere dominance over critical factors that influence how we experience self and therefore how we present to others, learn social skills and behavioral expectations. Right hemisphere dominance controls: – self-recognition of ones own face, ability to identify and describe feelings, our level of depersonalization, lack of sense of self, fear, grief, crying, morbid thoughts, ecstatic feelings 12 DO NOT COPY

13 The Learning Clinic November and the... – ability to connect relationships between past and current experience. (source memory) tangential thought, rambling, vague, loquacious speech 13 DO NOT COPY

14 The Learning Clinic November 2013 Volition (will) is modulated by right hemisphere function as is: – the ability to select and decide to take action – hold information in a fixed position in the mind in order to compare and contrast data – insight into consequences of actions – response to information directed at others versus self 14 DO NOT COPY

15 The Learning Clinic November 2013 The right hemisphere disorders can impair social awareness and behavior i.e. inability to comprehend emotional and social cues. Such impairment can cause lack of social greeting, eye contact and facial expression. A person may have a normal to high IQ but lack the social pragmatic skills needed for social interactions, friendship and close personal relationships and motivation for social acceptance. Impaired verbal communication of nonverbal affective signals Impaired higher level inferential reasoning (figures of speech, sarcasm) 15 DO NOT COPY

16 The Learning Clinic November 2013 The lack of prosodic communication and impoverished gestural behavior are also evident. Flat affect, impaired awareness and responsiveness to social context is evident. Poor arithmetic and visuo-spatial skills are also evident with impaired right hemisphere function. – demonstrate motor persistence – ability to perform two motor acts simultaneously DO NOT COPY

17 The Learning Clinic November 2013 Differential Diagnosis Asperger Syndrome Childhood onset of symptoms Impaired social judgment Poor peer relationships Lack of social reciprocity Multiple psychiatric diagnoses Poor response to psychotropic treatments Somatic complaints Discrepancy between verbal and performance IQ (verbal high score) Preferred, more successful relationship with older people Repetitive ideation Schizo-Affective Disorder Schizophrenia Lack of cause & effect reasoning Psychotic presentation manifested by delusion and/or hallucination Stabilized by psychotropic medications Affect inappropriate to context Executive Function Deficits Isolative 17 DO NOT COPY

18 The Learning Clinic November Classical Autism Asperger Syndrome Cognitive Traits Observed IQ < 75 Intelligence quotient is the product of measurements of a series of subtests in both verbal and nonverbal competencies compared to a norm based group 50 Perceptual Difficulties Measurements of abilities to perform subtest tasks that assess visual, tactile, auditory, motor developmental level performance. 52 Executive Function Cognitive abilities necessary for complex goal-directed behavior and adaptation to a range of environmental changes and demands. Executive function includes the ability to plan and anticipate outcomes (cognitive flexibility) and to direct attentional resources to meet the demands of non-routine events. 13 Proprioception Knowledge about the position of ones body in space that is based on sensory information from receptors in the muscles, tendons, and viscera. 14 Chart of Comparative Symptoms DO NOT COPY

19 The Learning Clinic November Classical Autism Asperger Syndrome Cognitive Rigidity Concrete thinking often associated with inability to transfer attention away from one stimulus to another, or to pay attention to more than one stimulus at a time. Impedes ability to benefit from verbal self- regulation and even verbal instructions received. Often manifests as an inability to modify behavior according to feedback or responses from others. 52 Sensory Sensitivity Deficits in sensory sensitivity manifest as either over (hyper) and under (hypo) responsive to sensory stimuli. Perceived intensity of the sensory stimuli is can be either high or low. 53 Apprehension of Context or Cues Awareness and understanding the setting or circumstances in which an event occurs. Also awareness and understanding of verbal or nonverbal behavior that serves as prompts for a response. 13 Connotative and Denotative Language Deficits Denotative meaning of a word is its literal meaning; Connotative meaning of a word is its figurative meaning, associations related to the word. These associations can be personal or general to ones culture. 54 DO NOT COPY

20 The Learning Clinic November Classical Autism Asperger Syndrome Communication Disorder A speech or language disorder which refers to problems in communication and in related areas such as oral motor function. Can manifest as saying sounds incorrectly to being completely unable to speak. The inability to demonstrate the social pragmatics of reciprocal communication. 53 Meta Cognitive Deficits: Analysis, Synthesis, Evaluation; Social Pragmatics Analysis and Synthesis are prerequisites for Evaluation. Analysis – is the process of breaking a complex topic into smaller parts to gain a better understanding. Closely examining something to understand its parts and the ways they work together. 53 Synthesis – to combine separate elements or components in order to form a coherent whole. Bringing together information from several sources to make a new point. 03 Evaluation - the systematic determination of merit, worth and significance of something using criteria against a set of standards. Your informed judgment. 03 DO NOT COPY

21 The Learning Clinic November Classical Autism Asperger Syndrome Social Pragmatics - social language involving learning rules for interacting with others in socially acceptable behaviors. Includes language development of vocabulary and grammar into meaningful speech patterns for communication. 02 Expressive –Receptive Language Deficits Expressive Language Deficits – distinctly limited vocabulary, errors in tense, difficulty recalling words or producing sentences with developmentally appropriate length or complexity, and general difficulty expressing ideas. 53 Receptive Language Deficits – difficulty understanding words, sentences, or specific types of words. 53 Developmental Delays – Source Memory Developmental Delay – Any significant delay in a childs physical, cognitive, behavioral, emotional or social development in comparison with established norms for the childs age. 54 Source Memory – Memory for the circumstances in which an episodic memory is formed. Episodic memory is context specific, and often personal, preserving the time and space aspects of past events. 13 DO NOT COPY

22 The Learning Clinic November Classical Autism Asperger Syndrome Social Skills Prospective Planning Ability to develop future plans, e.g., appointments, and actions. 13 Self-Regulation The ability to exercise self-control, and includes the skills of planning, self-monitoring, other awareness, delayed gratification and goal setting. 13 Social Judgment Impairments The ability to choose a socially appropriate behavior in response to a social interaction 13 Reciprocity Impairments Turn taking in communication and other interactions. Providing others with an opportunity to respond and/or provide input during a conversation or social interaction. 13 Structure Dependent Dependence on pre-planned schedules, routines, advance rehearsal. 54 Resiliency Difficulties The ability to recover readily from disappointments, adversity, performance errors, embarrassment 12 DO NOT COPY

23 The Learning Clinic November Classical Autism Asperger Syndrome Limited Interests Restricted range of interests. Narrow band of activities or hobbies in which the person engages. 54 Delayed Gratification Difficulties The ability to postpone pursuit or attainment of a desired activity or object. 14 Redirection Verbal direction to return to behavior that is task relevant 54 Prompt Verbal, ideogram or diagram that provides assistance to stay on task. 53 Social & Tangible Reinforcements Unreliable Inconsistent response to the availability of social or concrete/physical rewards and ratio of positive reinforcement 23 Social Development Delays A delay in the development of social interaction skills and social competence in children. The child lags behind the normative schedule for acquiring social skills. 54 DO NOT COPY

24 The Learning Clinic November Classical Autism Asperger Syndrome Physical Behaviors Self-Harm Demonstration of self-injurious behaviors. 42 Self-Stimulation Dependent Stereotyped, functionally autonomous behaviors. Repetitive body movements or repetitive movement of objects used solely to simulate ones own senses. 41 Physical Development Delays A delay in the physical development of children. The child lags behind the normative schedule for biological milestones. 53 Emotional Dysregulation Anxiety A dysregulated psychological or physiological state in response to a perceived stressor; a state characterized by somatic, emotional, cognitive and behavioral components, such as fear or nervousness about what might happen (anticipation), worry. 54 Aggression A forceful act or procedure, intended to dominate or master. Behavior aimed at causing harm or pain, psychological harm, or personal injury or physical distraction. 52 DO NOT COPY

25 The Learning Clinic November Classical Autism Asperger Syndrome Naïve Lack of experience or knowledge: lacking in worldly wisdom or informed judgment. 53 Isolative Tendency or desire to seek solitude; avoids social contact. 53 Impulsive Tendency to behave without forethought, and without considering the consequences of ones actions. To act suddenly without careful thought. 53 Goals Responsivity to non-verbal ideograms Ability to demonstrate a physical or verbal response in a presence of symbolic language, such as icons, pictures, that illustrate concepts or actions. 44 Supported Living During High School Provision of the necessary support, training, and assistance to students with developmental disabilities during high school years. 54 DO NOT COPY

26 The Learning Clinic November Classical Autism Asperger Syndrome Supported Living Post High School Provision of the necessary support, training, and assistance to students with developmental disabilities during post high school years. 53 In Home Services Services to provide functional analysis of child-parent-sibling interaction. Intervention protocols are provided by professional and paraprofessional staff at the childs residence. 52 Independent Living Adolescents over 18 and young adults provided residential living within the community. Support services are typically provided and monitored. 03 Supported Employment Employment provided in conjunction with agency advocacy, training, job coaching and monitoring 13 Modified Employment Student or young adult is able to have the employment expectations modified to suit their needs; level of supervision, specific challenges and schedule by their employer. 15 DO NOT COPY

27 The Learning Clinic November Classical Autism Asperger Syndrome Competitive Employment Student sixteen or older; self-initiated contact with employer for interview and paid employment. 03 High School Applied Instruction and Experiential Training High school instruction is modified to provide employer required skill sets, and applied onsite training. 15 Post Diploma Training or Education Achievement of academic requirements is met and diploma deferred until transition to work or college skills are met by demonstration and application. 03 DO NOT COPY

28 The Learning Clinic November LEGEND 0 = no behavior observed(0 out of 10 times)Behavior is never observed 1 = 1-20% of the time(1-2 out of 10 times)Behavior is rarely observed 2 = 21-40% of the time(3-4 out of 10 times)Behavior is sometimes observed 3 = 41-60% of the time(5-6 out of 10 times) Behavior is evident in many settings, performance is inadequate and inconsistent; Skill still dependent on external prompts. 4 = 61-80% of the time(7-8 out of 10 times) Demonstrated in most settings; Evidence of a level of persistent behavior 5 = % of the time(9-10 out of 10 times) Demonstrated consistency in all settings DO NOT COPY

29 The Learning Clinic November 2013 Diagnostic Characteristics Autism High Functioning Autism PDD NOS Developmental Anomalies Asperger Syndrome 29 DO NOT COPY

30 The Learning Clinic November 2013 Cognitive Functioning Medications 30 DO NOT COPY

31 The Learning Clinic November 2013 Psychological Symptoms Age / Time 31 DO NOT COPY

32 The Learning Clinic November 2013 Clinical Symptoms and Learning Disabilities Grade 32 DO NOT COPY

33 The Learning Clinic November 2013 Which Asperger Symptoms Compete with Independence? Degree of Anosognosia Age Over time, symptoms become ego syntonic 33 DO NOT COPY

34 The Learning Clinic November 2013 Personalized Treatment Model (PTM) requires identifying idiosyncrasies in each persons general diagnosis that are relevant to predicted treatment outcomes. This PTM approach to treatment indicates the following three part focus for treatment: I. Psychopharmacological Management: – Genotyping to identify open or deficient pathways to drug metabolism and given medication options – Co-occurring conditions require treatment triage to maximize generalizations. – Number of discontinued medication trials – Historical polypharmacy – Dose changes through and over time – Medication synergies – Unintended outcomes from particular prescriptive drug use – weight gain, cognitive function interference 34 DO NOT COPY

35 The Learning Clinic November 2013 AS or PDD:NOS Diagnosis N = 41 Genetic Pathway# Dysfunctional% Dysfunctional 2C9 and/or 2C19 and/or 2D % 35 DO NOT COPY

36 The Learning Clinic November 2013 Autistic Spectrum Disorder N = 27 Genetic Pathway# Dysfunctional% Dysfunctional 2C9 and/or 2C19 and/or 2D % 36 DO NOT COPY

37 The Learning Clinic November 2013 All Diagnoses N = 41 Genetic Pathway# Dysfunctional% Dysfunctional 2C9 and/or 2C19 and/or 2D % 37 DO NOT COPY

38 The Learning Clinic November 2013 Dysfunctional Metabolization by Genetic Pathways Total Sample = 41 Genetic Pathway# Dysfunctional% Dysfunctional 2C % 2C % 2D % 38 DO NOT COPY

39 Type of Diagnosis - # of Students (N=73) ADHD45 Asperger Syndrome28 PDD NOS22 Bipolar D/O or Bipolar NOS20 Mood D/O & Depression18 Dysthymic Disorder 2 PTSD 1 ODD 6 OCD 4 Cannabis Abuse 1 Tourettes Disorder 5 Reactive Attachment Disorder 2 Separation Anxiety 3 Anxiety Disorders28 Communication Disorders13 Learning Disabilities42 The Learning Clinic November DO NOT COPY

40 TLC: # Diagnoses per Student # of Diagnoses# of Students N= The Learning Clinic November DO NOT COPY

41 The Learning Clinic November 2013 Diagnostic Categories of Students with Abnormal Metabolization of 1 or More Genetic Pathways DiagnosesTotal by Diagnosis% Dysfunctional (based on N = 39) Bipolar Disorder % Depression 37.7% Mood D/O NOS 717.9% Bipolar, Mood D/O NOS, or Depression % Asperger Syndrome % PDD, NOS % Asperger Syndrome or PDD, NOS % Co-Morbid Autistic Spectrum & Any Mood Disorder % 41 DO NOT COPY

42 The Learning Clinic November 2013 Diagnostic Categories of Students with Abnormal Metabolization of 1 or More Genetic Pathways DiagnosesTotal by Diagnosis% Dysfunctional (based on N = 39) Anxiety Disorders % OCD 25.1% Tourettes Disorder 512.8% ADHD % ODD 820.5% Communication D/O 410.3% LDs - all % PTSD 25.11% /Continued 41 DO NOT COPY

43 The Learning Clinic November 2013 Percentage of Medication Metabolized thru 2D6 66.7% Stimulant 73.3%Antidepressants 81.3%Neuroleptics 43 DO NOT COPY

44 The Learning Clinic November 2013 Goals Short-termobjectives focus: self-regulation resiliency Intermediate functional social judgment disclosure interpersonal communication Long-term family separation and individuation 44 DO NOT COPY

45 The Learning Clinic November 2013 Other Developmental Issues Deviation from normal development Do not Outgrow Developmental Deficits Stress Impairs Performance Co-Morbid Diagnoses Impairs Overall Functioning 45 DO NOT COPY

46 The Learning Clinic November 2013 Competing Clinical Behaviors Perseveration Obsessive Thought Rigid Cognitive Style Inability to Shift from Personal View to Data - Based Decision 46 DO NOT COPY

47 The Learning Clinic November 2013 Competing Clinical Behaviors Confabulation Affirming False Information Stealing Sexually Inappropriate Actions and Statements / Continued 47 DO NOT COPY

48 The Learning Clinic November 2013 Competing Clinical Behaviors Violation of Boundaries Cognitive Disorientation and Distortion / Continued 48 DO NOT COPY

49 The Learning Clinic November 2013 II. Therapeutic Needs for Management: – Social/Developmental atypical ties – Specific developmental strengths and deficits – Family history of DSM diagnoses – Clinical service history: individual, group, family, extended family therapy, partial hospital care, hospitalization – Specific family stressors – Treatment methods used and outcomes: CBT, Family Systems, Child-Parent Interactive Therapy, etc. – Fit of treatment approaches to clinical diagnoses, as perceived by family and child – GAF and Prognosis – Genetic markers associated with current diagnoses 49 DO NOT COPY

50 The Learning Clinic November 2013 III. Special Education Services A. Student Role Performance – Assessment through time and over time – Reliability of observations (in-vivo) teacher, mother, father, self – Targeted performance over time - minus baseline data = treatment benefit B. Level of intervention for in-school services through time and over time, – e.g., full inclusion, partial special classroom, shadow monitor, full special class, in-home supports, day outplacement, residential placement C. Evidence-based outcomes plus unintended outcomes D. Evidence of communication with parents E. Evidence of collaboration among professional disciplines: pediatrician, psychiatrist, developmental specialist, special educator, speech and language specialist, other DO NOT COPY

51 The Learning Clinic November 2013 F. Evidence of cohesive treatment and integrated services particular to an ASD individuals requirements G. Academic modifications: evidence-based procedures such as teacher verbal or visual demonstration, rehearsal, prompting, redirection strategies, backwards chaining for sequential instruction, active learning instructional methods, Virtual Lab and CAI instruction. H. School and classroom ecology designed to structure support and elicit student role behaviors for individuals with ASD diagnoses. I. Safe school orientation operationalized to provide standards of accountability for staff and students regarding bullying, victimization, mutual respect and peer support 51 DO NOT COPY

52 The Learning Clinic November 2013 J. IEP written with personalized strategies to accommodate idiosyncrasies in student strengths and deficiencies with related assessment protocols: 1. Student role performance 2. Measures of retained academic skills 3. Measured ability to apply knowledge to real world problems 4. Self-regulation and classroom performance commensurate with the individuals developmental age 5. IEP fit with assessed transition to post-high school plan, e.g., social judgment, pragmatic language skills, self-regulation, college experience, vocational experience, independent living skills, and experience with competitive employment (TILSA) 52 DO NOT COPY

53 The Learning Clinic November 2013 And IQ scores in another study accounted for more differences between groups than diagnoses (Rodman, J.L. et al, 2010) on measures of object exploration, diversity of play, and turn-taking tasks in young children. Criteria for Comprehensive Treatment Models for Individuals with ASD (J. Autism and Dev. Disorders (2010) ODOM, et al) describe an evaluation system endorsed by the American Evaluation Association (2008). 53 DO NOT COPY

54 The Learning Clinic November 2013 Six Features of a Comprehensive Treatment 1.Operationalized Practices: Manuals illustrate what to do and how to do it. 2. Practices must be replicated. 3. Demonstrate types of empirical evidence, e.g. articles, book chapters, books. 4. Quality of Methodology 5. Use of complementary evidence 6. Evaluation rating scales applied to practice 54 DO NOT COPY

55 The Learning Clinic November 2013 Examples of empirically oriented practices: 1. ABA design with single subject assignment 2. Discrete trial training 3. Prompting and Sir Training 4. Involve typically developed children 5. High fidelity of implementation 6. Use psychometric inter-rater reliability 7. Demonstrate peer review quality The parameters for comprehensive treatment, plus the lack of evidence for a diagnostic nosology for each subtype of ASD, leads in the direction of a personalized treatment algorithm, e.g., a set of rules to solve this problem 55 DO NOT COPY

56 The Learning Clinic November DO NOT COPY

57 The Learning Clinic November 2013 Personalized/Ecological Treatment Model Cohesive Treatment, Integrated/Personalized DCF Licensed NEASC SDE Approval Clinical Medication Therapy Psycho- Education Residential Living Structure-Performance Independent Living Skills Co-ed Transition Living Skills Community Setting – NE CT Shopping QVCC Working Recreation Home Community 57 DO NOT COPY

58 General issues in diagnosis Changes in DSM 5 autism spectrum (ASD) criteria New Social Communication Disorder diagnosis Specifiers Assessment of overall impairment Severity levels within ASD Early identification General comments Not discussing but ask me about intellectual disabilities, communication disorders or learning disabilities Outline of talk The Learning Clinic November DO NOT COPY

59 Both positive (abnormal) behaviors, and negative (the absence of normal) behaviors are required to make a diagnosis of ASD. This means that developmental level (the age level at which a person is functioning) and situational effects (in what kind of circumstances does the child or adult behave like this?) can both have significant effects on diagnostic judgments. The Learning Clinic November DO NOT COPY

60 Autism is a developmental disorder: What is manifested as autism changes with development Development is affected by having autism The Learning Clinic November DO NOT COPY

61 Implications of a diagnosis Causes* Course and prognosis** Appropriate treatments** Risk or associated difficulties** The Learning Clinic November DO NOT COPY

62 Worldwide standard criteria (DSM IV/ICD-10) With combined history/informant report and direct observation, excellent sensitivity and specificity for prototypic autism in preschool and school age children Diagnoses of ASD are generally stable. Within a research program, clinical best estimates add to stability of a diagnosis. Where are we now in diagnosis? The Learning Clinic November DO NOT COPY

63 Pervasive Developmental Disorders Social Impairment Repetitive Behaviors & Restricted Interests Speech/ Communication Deficits Autism Language Disorders Intellectual Disabilities The Learning Clinic November DO NOT COPY

64 Core Symptom Domains PLUS Associated Medical Features (this does not count strengths, which would add other circles) Social Impairment & Restricted Interests Speech/ Communication Deficits Obsessive Compulsive Disorder AUTISM SPECTRUM DISORDERS Language Disorders Intellectual Disabilities ADHD Social Anxiety OCD Aggression Epilepsy- EEG abnormalities Motor problems: Apraxia Immune Dysfunction Gastro- intestinal Dysfunction Sleep Disturbance The Learning Clinic November DO NOT COPY

65 More referrals of: Toddlers and 2 year-olds Older children without intellectual disabilities Adolescents and adults often with psychiatric co-morbidities Early intervention (and positive effects) These changes all make diagnosis more complicated. Less association with intellectual disability; children without significant language or cognitive delay present different pictures However, the landscape of autism has changed The Learning Clinic November DO NOT COPY

66 Then what? Faster diagnoses = narrower comparisons. More specific diagnoses = age- related examples. The Learning Clinic November DO NOT COPY

67 Do not to change who is included Make the framework more useful for all ages, all developmental levels and all degrees of severity where there is impairment Make sure that the criteria do describe ASD and dont describe many people who dont have ASD Allow separate ways of describing behaviors and noting etiology and associated conditions Goals in revising DSM5 criteria The Learning Clinic November DO NOT COPY

68 One spectrum of autistic disorders called Autism Spectrum Disorder (ASD) defined purely by behaviors No differentiation among autism, PDD- NOS, Asperger Syndrome, Childhood Disintegrative Disorder No differentiation within ASD among disorders by etiology (Rett Syndrome, Fragile X, other known genetic disorders) Draft Proposals for DSM 5 The Learning Clinic November DO NOT COPY

69 Scientific validity Questioning the importance of very early language milestones vs. fluent speech in older years Overlap in research when VIQ controlled Concern about access to services Many reasons to include Asperger Syndrome and PDD- NOS within one ASD diagnosis The Learning Clinic November DO NOT COPY

70 Over 2200 validated singletons with ASD; 8500 family members (two biological parents and, in most cases, at least one unaffected sibling) with DNA and intensive behavioral and neuropsychological phenotyping Recruited from 12 sites in the US and Canada Cell lines and phenotyping data are available through for interested scientistswww.sfari.org Simons Simplex Collection The Learning Clinic November DO NOT COPY

71 That people with diagnoses of Asperger Syndrome or PDD-NOS do not lose services because of being included in ASD That the ranges of skill levels and abilities within the spectrum of ASD are not underestimated themselves can use it Care needs to be taken The Learning Clinic November DO NOT COPY

72 –Social communication –Restricted interests and repetitive behaviors (RRBs) Three existing domains in DSM IV/ICD-10 (social, communication, restricted/repetitive) will become two domains: The Learning Clinic November DO NOT COPY

73 Studies within typical populations using brief parent reports often find three moderately correlated factors Social Impairment Repetitive Behaviors & Restricted Interests Speech/ Communication Deficits The Learning Clinic November DO NOT COPY

74 But within samples of children or adults with ASD Social-communication skills group are highly correlated and group together When they are not, differences are primarily accounted for by language level The Learning Clinic November DO NOT COPY

75 New Domains in Proposed DSM5 Restricted Interests & Fixated Interests Social Communication Expressive Language Level The Learning Clinic November DO NOT COPY

76 Deficits in social-emotional reciprocity Deficits in nonverbal communicative behaviors used for social interaction Deficits in developing and maintaining relationships, appropriate to developmental level For social-communication, criteria must be met within EACH subdomain The Learning Clinic November DO NOT COPY

77 A. Stereotyped or repetitive speech, motor movements or use of objects B. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior or excessive resistance to change C. Highly restricted, fixated interests that are abnormal in intensity or focus D. Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment All individuals must have or have had restricted interests and repetitive behaviors (in at least 2 of 4 domains) The Learning Clinic November DO NOT COPY

78 RBS-R ADI-R RRB Items RSM IS Stereotypy Sameness Compulsive Self-injury Restricted Self-injury Item Circumscribed Interests Item NVIQ ADOS RSM Items All correlations significant at p<.001 DO NOT COPY

79 The low social communication abilities result in functional limitations in effective communication, social participation, academic achievement or occupational performance, alone or in any combination. In ICD-11 proposed criteria, this group remains within ASD. Social Communication Disorder (SCD) The Learning Clinic November DO NOT COPY

80 Social Communication Disorder (SCD) 1)is an impairment of pragmatics 2)diagnosed based on difficulty in the social uses of verbal and nonverbal communication in naturalistic contexts, 3)which affects the development of social relationships and discourse comprehension and 4) cannot be explained by low abilities in the domains of word structure and grammar or general cognitive ability. The Learning Clinic November DO NOT COPY

81 Rule out Autism Spectrum Disorder. Autism spectrum disorder by definition encompasses pragmatic communication problems, but also includes restricted, repetitive patterns of behavior, interests or activities as part of the autism spectrum. Therefore, ASD needs to be ruled out for SCD to be diagnosed. Social Communication Disorder (SCD) The Learning Clinic November DO NOT COPY

82 Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities). Social Communication Disorder (SCD) The Learning Clinic November DO NOT COPY

83 Specifiers : With the new criteria, if the child has ASD symptoms, he or she gets an ASD diagnosis with a specifier for the etiology: ASD with Rett Syndrome ASD with Fragile X ASD with 15q11-13 Or ASD with tonic-clonic seizures ASD with chronic irritable bowel syndrome The Learning Clinic November DO NOT COPY

84 Early History Is Also Specified Through: A.Age of Perceived Onset B.Pattern of Onset (Loss? Of what skills?) C.Examples: 1)ASD With Onset Before 18 Months And Loss Of Words And Social Skills 2)ASD With Onset By Age 30 Months And Loss Of Social Skills 3)ASD With No Clear Onset And No Loss The Learning Clinic November DO NOT COPY

85 Dimensional Ratings for DSM 5 ASD Social CommunicationFixated Interests and Repetitive Behaviors Requires very substantial support Minimal social communicationMarked interference in daily life Requires substantial support Marked deficits with limited initiations and reduced or atypical responses Obvious to the casual observer and occur across context Requires some supportEven with support, noticeable impairments Significant interference in at least one context Subclinical symptoms Some symptoms in this or both domains; no significant impairment Unusual or excessive but no interference Normal variationMaybe awkward or isolated but WNLWNL for developmental level and no interference DO NOT COPY The Learning Clinic November 2013

86 For a variety of domains relevant to almost any psychiatric condition Some of them are: Developmental level or nonverbal and verbal IQ Adaptive functioning Verbal abilities at the time of intake Hyperactivity/impulsivity Sleeping difficulties Assessment of general dimensions The Learning Clinic November DO NOT COPY

87 Autism is not all that is problematic for many families and individuals (comorbidities including language delay, intellectual disabilities and other psychological disorders) Strengths also make a difference – in the person with ASD and the family Autism is more than the sum of its parts The Learning Clinic November DO NOT COPY

88 Lingering questions Prioritizing sensitivity makes sense but has some dangers Diagnostic criteria for disorders are not the same as diagnoses Importance of other factors to ASD The Learning Clinic November DO NOT COPY

89 Can ASD become a disorder that implies a constellation o behaviors or characteristics that affect everyday functioning? But has a range of etiologies A range of severities Can be highly impairing or not at all as development progresses Has predictable but different trajectories Can be treated and perhaps eventually prevented as we understand its causes Should be addressed in all developmental and standard psychiatric and psychological screenings In summary The Learning Clinic November DO NOT COPY

90 Sensitivity and Specificity of Proposed DSM-5 Criteria StudyASD nSensitivit y Non-ASD n Specificity Frazier et al. (2012) McPartland et al. (2012) Huerta et al. (submitted) SRS and SCQ-L items mapped to DSM-5 criteria 2. DSM-IV checklist mapped to DSM-5 criteria 3. ADI-R items mapped to DSM-5 criteria DO NOT COPYThe Learning Clinic November

91 Child doesnt have enough behaviors to see abnormalities Parents are not yet aware of how social most babies are Whatever autism is, hasnt emerged Adults automatically fill in for a young child Other factors make the assessment difficult (child is tired, hungry, uncomfortable) Want to be careful not to judge too quickly, but dont want to miss opportunity to treat Issues in early identification DO NOT COPYThe Learning Clinic November

92 Have enough time to do the assessment Get information from multiple sources Have professionals experienced both with typical young children and with young children with autism Be willing to re-evaluate Ways to address these issues DO NOT COPYThe Learning Clinic November

93 Behaviors or characteristics that affect everyday functioning? But has a range of etiologies A range of severities Can be highly impairing or not at all as development progresses Has predictable but different trajectories Can be treated and perhaps eventually prevented as we understand its causes Should be addressed in all developmental and standard psychiatric and psychological screenings Should have standard follow-up (not a one-time diagnosis) In summary DO NOT COPYThe Learning Clinic November

94 Susan Swedo, M.D., pediatrician and chair Gillian Baird, M.D., developmental pediatrician Edwin Cook Jr, M.D., child psychiatrist Francesca Happe, Ph.D., developmental psychologist James Harris, M.D., child psychiatrist Water Kaufmann, M.D., neurologist Bryan King, M.D., child psychiatrist Catherine Lord, Ph.D., clinical psychologist Joseph Piven, M.D., child psychiatrist Sally Rogers, Ph.,D., developmental and clinical psychologist Sarah Spence, M.D., child neurologist Rosemary Tannock, Ph.,D., pediatric neuropsychologist Amy Wetherby, Ph.D., speech-language pathologist Harry Wright, M.D., child psychiatrist DSM5 Committee on Neurodevelopmental Disorders The Learning Clinic November DO NOT COPY


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