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Autism Spectrum Disorder: Asperger Syndrome

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1 Autism Spectrum Disorder: Asperger Syndrome
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 DO NOT COPY The Learning Clinic November 2013

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

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 Autism first Category changed to Autism first tracked 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 Asperger’s; Statistical Manual of Mental education only six diagnostic criteria had to be met. Disorders, third edition). DO NOT COPY The Learning Clinic November 2013

4 The Learning Clinic November 2013
Diagnosis Onset of Symptoms Gender Social 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 Rett’s Disorder Five months normal development; diagnosed between 5-48 months Females Loss 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 Disintegrative 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) 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 DO NOT COPY The Learning Clinic November 2013

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

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

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. DO NOT COPY The Learning Clinic November 2013

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. DO NOT COPY The Learning Clinic November 2013

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) Attribution Tasks 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. The Learning Clinic November 2013 DO NOT COPY

10 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 DO NOT COPY The Learning Clinic November 2013

11 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 D’Espisito (2004). DO NOT COPY The Learning Clinic November 2013

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 one’s own face, ability to identify and describe feelings, our level of depersonalization, lack of sense of self, fear, grief, crying, morbid thoughts, ecstatic feelings DO NOT COPY The Learning Clinic November 2013

13 The Learning Clinic November 2013
. . . and the . . . ability to connect relationships between past and current experience. (source memory) tangential thought, rambling, vague, loquacious speech DO NOT COPY The Learning Clinic November 2013

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 DO NOT COPY The Learning Clinic November 2013

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) DO NOT COPY The Learning Clinic November 2013

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 The Learning Clinic November 2013

17 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 DO NOT COPY The Learning Clinic November 2013

18 The Learning Clinic November 2013
Chart of Comparative Symptoms 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 5 Perceptual Difficulties Measurements of abilities to perform subtest tasks that assess visual, tactile, auditory, motor developmental level performance. 2 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. 1 3 Proprioception Knowledge about the position of one’s body in space that is based on sensory information from receptors in the muscles, tendons, and viscera. 4 DO NOT COPY The Learning Clinic November 2013

19 The Learning Clinic November 2013
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. 5 2 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. 3 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. 1 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 one’s culture. 4 DO NOT COPY The Learning Clinic November 2013

20 The Learning Clinic November 2013
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. 5 3 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. 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. Evaluation - the systematic determination of merit, worth and significance of something using criteria against a set of standards. Your informed judgment. DO NOT COPY The Learning Clinic November 2013

21 The Learning Clinic November 2013
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. 2 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. 5 3 Receptive Language Deficits – difficulty understanding words, sentences, or specific types of words. Developmental Delays – Source Memory Developmental Delay – Any significant delay in a child’s physical, cognitive, behavioral, emotional or social development in comparison with established norms for the child’s age. 4 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. 1 DO NOT COPY The Learning Clinic November 2013

22 The Learning Clinic November 2013
Classical Autism Asperger Syndrome Social Skills Prospective Planning Ability to develop future plans, e.g., appointments, and actions. 1 3 Self-Regulation The ability to exercise self-control, and includes the skills of planning, self-monitoring, other awareness, delayed gratification and goal setting. Social Judgment Impairments The ability to choose a socially appropriate behavior in response to a social interaction 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. Structure Dependent Dependence on pre-planned schedules, routines, advance rehearsal. 5 4 Resiliency Difficulties The ability to recover readily from disappointments, adversity, performance errors, embarrassment 2 DO NOT COPY The Learning Clinic November 2013

23 The Learning Clinic November 2013
Classical Autism Asperger Syndrome Limited Interests Restricted range of interests. Narrow band of activities or hobbies in which the person engages. 5 4 Delayed Gratification Difficulties The ability to postpone pursuit or attainment of a desired activity or object. 1 Redirection Verbal direction to return to behavior that is task relevant Prompt Verbal, ideogram or diagram that provides assistance to stay on task. 3 Social & Tangible Reinforcements Unreliable Inconsistent response to the availability of social or concrete/physical rewards and ratio of positive reinforcement 2 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. DO NOT COPY The Learning Clinic November 2013

24 The Learning Clinic November 2013
Classical Autism Asperger Syndrome Physical Behaviors Self-Harm Demonstration of self-injurious behaviors. 4 2 Self-Stimulation Dependent Stereotyped, functionally autonomous behaviors. Repetitive body movements or repetitive movement of objects used solely to simulate one’s own senses. 1 Physical Development Delays A delay in the physical development of children. The child lags behind the normative schedule for biological milestones. 5 3 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. 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. DO NOT COPY The Learning Clinic November 2013

25 The Learning Clinic November 2013
Classical Autism Asperger Syndrome Naïve Lack of experience or knowledge: lacking in worldly wisdom or informed judgment. 5 3 Isolative Tendency or desire to seek solitude; avoids social contact. Impulsive Tendency to behave without forethought, and without considering the consequences of one’s actions. To act suddenly without careful thought. 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. 4 Supported Living During High School Provision of the necessary support, training, and assistance to students with developmental disabilities during high school years. DO NOT COPY The Learning Clinic November 2013

26 The Learning Clinic November 2013
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. 5 3 In Home Services Services to provide functional analysis of child-parent-sibling interaction. Intervention protocols are provided by professional and paraprofessional staff at the child’s residence. 2 Independent Living Adolescents over 18 and young adults provided residential living within the community. Support services are typically provided and monitored. Supported Employment Employment provided in conjunction with agency advocacy, training, job coaching and monitoring 1 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. DO NOT COPY The Learning Clinic November 2013

27 The Learning Clinic November 2013
Classical Autism Asperger Syndrome Competitive Employment Student sixteen or older; self-initiated contact with employer for interview and paid employment. 3 High School Applied Instruction and Experiential Training High school instruction is modified to provide employer required skill sets, and applied onsite training. 1 5 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. DO NOT COPY The Learning Clinic November 2013

28 The Learning Clinic November 2013
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 The Learning Clinic November 2013

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

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

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

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

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

34 The Learning Clinic November 2013
Personalized Treatment Model (PTM) requires identifying idiosyncrasies in each person’s 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 DO NOT COPY The Learning Clinic November 2013

35 AS or PDD:NOS Diagnosis N = 41
Genetic Pathway # Dysfunctional % Dysfunctional 2C9 and/or 2C19 and/or 2D6 39 95.1% DO NOT COPY The Learning Clinic November 2013

36 Autistic Spectrum Disorder N = 27
Genetic Pathway # Dysfunctional % Dysfunctional 2C9 and/or 2C19 and/or 2D6 27 100% DO NOT COPY The Learning Clinic November 2013

37 The Learning Clinic November 2013
All Diagnoses N = 41 Genetic Pathway # Dysfunctional % Dysfunctional 2C9 and/or 2C19 and/or 2D6 39 95.1% DO NOT COPY The Learning Clinic November 2013

38 Dysfunctional Metabolization by Genetic Pathways Total Sample = 41
14 34.1% 2C19 11 26.8% 2D6 31 75.6% DO NOT COPY The Learning Clinic November 2013

39 Type of Diagnosis - # of Students (N=73)
ADHD Asperger Syndrome 28 PDD NOS Bipolar D/O or Bipolar NOS 20 Mood D/O & Depression 18 Dysthymic Disorder 2 PTSD ODD OCD Cannabis Abuse Tourette’s Disorder 5 Reactive Attachment Disorder 2 Separation Anxiety 3 Anxiety Disorders 28 Communication Disorders 13 Learning Disabilities 42 DO NOT COPY The Learning Clinic November 2013

40 TLC: # Diagnoses per Student
# of Diagnoses # of Students N=73 1 3 2 21 24 4 15 5 6 7+ DO NOT COPY The Learning Clinic November 2013

41 Diagnostic Categories of Students with Abnormal Metabolization of 1 or More Genetic Pathways
Diagnoses Total by Diagnosis % Dysfunctional (based on N = 39) Bipolar Disorder 14 35.9% Depression 3 7.7% Mood D/O NOS 7 17.9% Bipolar, Mood D/O NOS, or Depression 25 64.1% Asperger Syndrome 17 43.6% PDD, NOS 10 25.6% Asperger Syndrome or 27 69.2% Co-Morbid Autistic Spectrum & Any Mood Disorder DO NOT COPY The Learning Clinic November 2013

42 The Learning Clinic November 2013
Diagnostic Categories of Students with Abnormal Metabolization of 1 or More Genetic Pathways /Continued Diagnoses Total by Diagnosis % Dysfunctional (based on N = 39) Anxiety Disorders 17 43.6% OCD 2 5.1% Tourette’s Disorder 5 12.8% ADHD 26 66.7% ODD 8 20.5% Communication D/O 4 10.3% LD’s - all 15 38.5% PTSD 5.11% DO NOT COPY The Learning Clinic November 2013 41

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

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

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

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

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

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

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 DO NOT COPY The Learning Clinic November 2013

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 The Learning Clinic November 2013

51 The Learning Clinic November 2013
F. Evidence of cohesive treatment and integrated services particular to an ASD individual’s 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 DO NOT COPY The Learning Clinic November 2013

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 individual’s 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) DO NOT COPY The Learning Clinic November 2013

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). DO NOT COPY The Learning Clinic November 2013

54 Six Features of a Comprehensive Treatment
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 DO NOT COPY The Learning Clinic November 2013

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 DO NOT COPY The Learning Clinic November 2013

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

58 The Learning Clinic November 2013
Outline of talk 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 DO NOT COPY The Learning Clinic November 2013

59 The Learning Clinic November 2013
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. DO NOT COPY The Learning Clinic November 2013

60 The Learning Clinic November 2013
Autism is a developmental disorder: What is manifested as autism changes with development Development is affected by having autism DO NOT COPY The Learning Clinic November 2013

61 Implications of a diagnosis
Causes* Course and prognosis** Appropriate treatments** Risk or associated difficulties** DO NOT COPY The Learning Clinic November 2013

62 Where are we now in diagnosis?
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. DO NOT COPY The Learning Clinic November 2013

63 Pervasive Developmental Disorders
Social Impairment Repetitive Behaviors & Restricted Interests Speech/ Communication Deficits Autism Intellectual Disabilities Language Disorders DO NOT COPY The Learning Clinic November 2013

64 Core Symptom Domains PLUS Associated Medical Features (this does not count strengths, which would add other circles) Gastro-intestinal Dysfunction Epilepsy- EEG abnormalities Aggression Social Impairment ADHD AUTISM SPECTRUM DISORDERS Sleep Disturbance Social Anxiety Speech/ Communication Deficits Immune Dysfunction Motor problems: Apraxia & Restricted Interests OCD Intellectual Disabilities Obsessive Compulsive Disorder Language Disorders DO NOT COPY The Learning Clinic November 2013

65 However, the landscape of autism has changed
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 DO NOT COPY The Learning Clinic November 2013

66 The Learning Clinic November 2013
Then what? Faster diagnoses = narrower comparisons. More specific diagnoses = age- related examples. The Learning Clinic November 2013 DO NOT COPY

67 Goals in revising DSM5 criteria
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 don’t describe many people who don’t have ASD Allow separate ways of describing behaviors and noting etiology and associated conditions DO NOT COPY The Learning Clinic November 2013

68 Draft Proposals for DSM 5
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) DO NOT COPY The Learning Clinic November 2013

69 The Learning Clinic November 2013
Many reasons to include Asperger Syndrome and PDD-NOS within one ASD diagnosis 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 DO NOT COPY The Learning Clinic November 2013

70 Simons Simplex Collection
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 scientists DO NOT COPY The Learning Clinic November 2013

71 The Learning Clinic November 2013
Care needs to be taken 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 DO NOT COPY The Learning Clinic November 2013

72 The Learning Clinic November 2013
Three existing domains in DSM IV/ICD-10 (social, communication, restricted/repetitive) will become two domains: Social communication Restricted interests and repetitive behaviors (RRBs) DO NOT COPY The Learning Clinic November 2013

73 Repetitive Behaviors & Restricted Interests Communication Deficits
Studies within typical populations using brief parent reports often find three moderately correlated factors Social Impairment Repetitive Behaviors & Restricted Interests Speech/ Communication Deficits DO NOT COPY The Learning Clinic November 2013

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 DO NOT COPY The Learning Clinic November 2013

75 New Domains in Proposed DSM5
Restricted Interests & Fixated Interests Social Communication Expressive Language Level DO NOT COPY The Learning Clinic November 2013

76 For social-communication, criteria must be met within EACH subdomain
Deficits in social-emotional reciprocity Deficits in nonverbal communicative behaviors used for social interaction Deficits in developing and maintaining relationships, appropriate to developmental level DO NOT COPY The Learning Clinic November 2013

77 All individuals must have or have had restricted interests and repetitive behaviors (in at least 2 of 4 domains) 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 DO NOT COPY The Learning Clinic November 2013

78 Circumscribed Interests All correlations significant at p<.001
ADOS RSM Items 0.32 0.39 Stereotypy 0.57 RSM -0.32 -0.28 NVIQ Sameness 0.48 ADI-R RRB Items IS RBS-R Compulsive 0.43 Self-injury Item Self-injury 0.49 Circumscribed Interests Item 0.30 Restricted All correlations significant at p<.001 DO NOT COPY

79 Social Communication Disorder (SCD)
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. DO NOT COPY The Learning Clinic November 2013

80 Social Communication Disorder (SCD) is an impairment of pragmatics
diagnosed based on difficulty in the social uses of verbal and nonverbal communication in naturalistic contexts, which affects the development of social relationships and discourse comprehension and cannot be explained by low abilities in the domains of word structure and grammar or general cognitive ability. DO NOT COPY The Learning Clinic November 2013

81 Social Communication Disorder (SCD) 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. DO NOT COPY The Learning Clinic November 2013

82 Social Communication Disorder (SCD)
Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities). DO NOT COPY The Learning Clinic November 2013

83 The Learning Clinic November 2013
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 DO NOT COPY The Learning Clinic November 2013

84 Early History Is Also Specified Through:
Age of Perceived Onset Pattern of Onset (Loss? Of what skills?) Examples: ASD With Onset Before 18 Months And Loss Of Words And Social Skills ASD With Onset By Age 30 Months And Loss Of Social Skills ASD With No Clear Onset And No Loss DO NOT COPY The Learning Clinic November 2013

85 Dimensional Ratings for DSM 5 ASD Social Communication
Fixated Interests and Repetitive Behaviors Requires very substantial support Minimal social communication Marked 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 support Even 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 variation Maybe awkward or isolated but WNL WNL for developmental level and no interference The Learning Clinic November 2013 DO NOT COPY

86 Assessment of general dimensions
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 DO NOT COPY The Learning Clinic November 2013

87 Autism is more than the sum of its parts
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 DO NOT COPY The Learning Clinic November 2013

88 The Learning Clinic November 2013
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 DO NOT COPY The Learning Clinic November 2013

89 The Learning Clinic November 2013
In summary 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 DO NOT COPY The Learning Clinic November 2013

90 Sensitivity and Specificity of Proposed DSM-5 Criteria
Study ASD n Sensitivity Non-ASD n Specificity Frazier et al. (2012)1 8911 .96 5863 .90 McPartland et al. (2012)2 657 .61 276 .95 Huerta et al. (submitted)3 .93 527 .63 1. 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 COPY The Learning Clinic November 2013

91 Issues in early identification
Child doesn’t have enough behaviors to see abnormalities Parents are not yet aware of how social most babies are Whatever autism is, hasn’t 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 don’t want to miss opportunity to treat DO NOT COPY The Learning Clinic November 2013

92 Ways to address these issues
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 DO NOT COPY The Learning Clinic November 2013

93 The Learning Clinic November 2013
In summary 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) DO NOT COPY The Learning Clinic November 2013

94 DSM5 Committee on Neurodevelopmental Disorders
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 DO NOT COPY The Learning Clinic November 2013


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