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Slide 1-

An Hour of Autism: Diagnosis, Treatment, What we do and don’t know Jennifer Bogin, M.S.ed, BCBA Director Division of Autism Spectrum Services
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Today we will talk about Defining ASD Core Symptoms/ Co-occurring Disorders Identification of ASD New Numbers/Prevalence DSM-5 Treatment of ASD Applied Behavior Analysis (ABA) Relationship-Based Methods Anything else??????
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Defining:Autism Spectrum Disorder 1943 – Leo Kanner – Infantile autism 1944 – Hans Asperger 1960s – Separation from schizophrenia 1970s – Biology / genetic underpinnings 1980 – DSM-III – Pervasive Developmental Disorders 1987 – DSM-III-R - Autistic Disorder / PDD-NOS 1994 – DSM-IV – Asperger’s Disorder 2013- DSM-5- Autism Spectrum Disorder
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Jenn’s Recipe for Autism Eruption* The Nature of the Disability (if one considers it a disability) Actual increase in incidence Increased identification Better treatments = Hope Insurance coverage (for hope) The Jenny McCarthy, Doug Flutie, factor Trending now….
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So of course it’s controversial.. We can (kind of) define who has it We have (almost) no idea what causes it We don’t know IF it is increasing IF it is then we don’t know why We can make it better (if you consider it a problem)
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The nature of Autism Spectrum Disorder Stayed tuned for more on DSM-5 later!
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Core Symptom DomainsPLUS Associated Medical Features 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
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Autism Spectrum Disorders (ASD)
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First lets look at Identification… We were pretty good at picking up this guy… (Early Onset) But now we’re picking up this one…. (Regression) What are the implications?
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Hot of the press… (March 27, 2014) – Today, the Centers for Disease Control and Prevention (CDC) released new data on the prevalence of autism in the United States. This surveillance study identified 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having autism spectrum disorder (ASD).
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Prevalence:What once was rare… Old estimate for autism: ~ 1/2500 (1985) Recent estimates for autism: ~ 1/500 (1995) Newest estimates for ASD: 1/150 (CDC, 2002) 1/110 (CDC, 2006) 1/88 (CDC, 2008) NOW- 1/68 (CDC, 2010)
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New diagnostic measures Autism Diagnostic Interview (1989, 1994) Autism Diagnostic Observation Schedule (1989, 2000) Screening tools/algorithms/instruments in wide use: MCHAT / AAP guidelines SCQ SRS Why are numbers increasing: Better tools?
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Diagnostic changes Categories Broadening Better tools and identification process Awareness Mental health providers, pediatricians, schools Media, parents Other factors: Previous underestimates Methodology for obtaining epidemiological data What else??? Why are numbers increasing: Lots of reasons?
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DSM-5 Distinctions can be difficult both within the spectrum and across other disorders Autism Spectrum Disorder Autistic D/O Asperger’s PDD-NOS
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DSM-5 Deficits in social communication (all 3): Deficits in nonverbal communication Deficits in social and emotional reciprocity Deficits in maintaining relationships Restricted, repetitive patterns of behavior, interest, and activities (2) Stereotyped motor or verbal behavior Unusual sensory behavior Excessive adherence to routines and ritualized bhx Restricted, fixated interests Symptoms present in early childhood (manifest when social demands exceed capabilities)
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Neurodevelopmental Underpinnings Core and associated vulnerabilities likely have complex neurogenetic origins: Evidence: Maleness (3:1 to 4:1) Familial loading/risk: MZ twins: 58-96% DZ twins: 0-31% Sibs: 5-20% (18.7% - Ozonoff et al., Pediatrics, 2011) 1% - Population
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299.00 Autism Spectrum Disorder A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text): 1. Deficits in social-‐emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-‐and-‐forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions. 2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated-‐ verbal and nonverbal communication; to abnormalities in eye contact and body-‐language or deficits in understanding and use of gestures, to a total lack of facial expression and nonverbal communication. 3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers
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299.00 Autism Spectrum Disorder B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text): 1. Stereotyped or repetitive motor movements, or use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases). 2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day). 3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests). 4. Hyper-‐or hypo-‐reactivity to sensory input or unusual interest in sensory aspects of environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
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299.00 Autism Spectrum Disorder C. Symptoms must be present in early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life). D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning. E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-‐occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
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(important) Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise need criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder
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The Importance of Effective Early Diagnosis and Treatment:A public health perspective Earlier diagnosis = More intervention opportunities More opportunities = Optimal intervention benefit Core features: social communication / atypical behaviors Cognitive and adaptive functioning Fully integrated classroom placements Potentially promoting optimal adaptive independence Potentially reducing considerable lifetime cost and service system demands associated with ASD and related care
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Noticing & Developing Concerns Discussing Concerns with Others Accurate Diagnosis From Concern to Effective Treatment Effective Treatment
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Complex and Stressful Process for Families Noticing & Developing Concerns Discussing Concerns with Others Accurate Diagnosis Partners Providers Friends “Everything is fine!” “Something is wrong!”
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Noticing & Developing Concerns Discussing Concerns with Others Accurate Diagnosis Partners Pediatrician Providers Friends Social Media CDC Google DAN AAP TV Blogosphere Autism Speaks Science in Context
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Costs of ASD Recent estimates of annual incremental costs (see Amendah et al., 2011) $2,100 – $11,200 medical expenditures $13,000 educational costs $40,000-$60,000 intensive behavioral tx $60,000-$128,000 residential costs for adults w/ASD Productivity loss, overall lifetime costs, quantification of impact of early intervention programs Most quoted total lifetime costs = $3.2 million (Ganz, 2007) Mean medical expenditures for Medicaid enrolled children 6 times greater for children with ASD: $10,709 to $1,816 (Peacock, 2012)
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Historical Perspective Not far removed from an “untreatable” era Rutter (1970): <2% functioning “normally” 60% requiring institutional placement/support Lovaas (1987): UCLA Young Autism Project Intensive ABA = 9 / 19 (47%) “recovered” or “normal functioning” A breakthrough with major methodological concerns
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Over short periods of time findings related to: language acquisition nonverbal communication reduction in challenging behaviors social skills Over longer periods of time: cognitive ability / IQ educational success Suggestions of medications and complementary agents: primarily associated symptoms claims of broad effects Two decades of research findings:
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Why Are We Doing This?Our fundamental assumption… Accurate early identification of a specific common neurodevelopmental disorder in childhood should help us connect to specific intervention and treatment options that optimize functioning for children and families
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Promise of ‘recovery’ (AKA HOPE) Actual randomized controlled studies ‘optimal outcome’ studies www.talkaboutcuringautism.org http://www.newautism.com/ (how I learned to cure autism) The ‘Bonding Hormone’ That Might Cure Autism Jenny McCarthy: My son's recovery from autism If Autism is your question, The Son-Rise Program is your answer! http://www.vitamindcouncil.org Can Clay Baths Cure Autism? Yes! http://www.earthclinic.com/CURES/autism.html
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Treatments and Therapies 78,300,000 results (0.08 seconds) Auditory Integration Sensory Integration ABA Discrete Trial Training Lovaas/UCLA Intervention Early Start Denver Model Holding Therapy Dolphin Assisted Therapy Facilitated Communication Augmentative Communication Vision Therapy Vitamins Hyperbaric Oxygen Psychopharmacological treatments Floortime Music Therapy Social Skills Training Incidental Teaching TEACCH PECS Pivotal Response Therapy Son-Rise RDI Chelation Diets Drugs Supplements
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Evidence-Based Interventions* Antecedent-Based Interventions (ABI) Computer-Aided Instruction Differential Reinforcement Discrete Trial Training Extinction Functional Behavior Assessment Functional Communication Training Naturalistic Intervention Parent-Implemented Intervention Peer-Mediated Instruction and Intervention Picture Exchange Communication System (PECS) Pivotal Response Training Prompting Reinforcement Response Interruption/ Redirection Self-Management Social Narratives Social Skills Groups Speech Generating Devices/ VOCA Structured Work Systems Task Analysis Time Delay Video Modeling Visual Supports
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Applied Behavior Analysis (ABA) What is ABA? How is it different from other approaches? How is it done?
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Baer, Wolf, & Risley (1968) APPLIED—strives to produce rapid and clear benefit to problems of social importance; BEHAVIORAL—uses objective and accurate measurement of the behavior of interest; ANALYSIS—uses controlled (single-case) methods to understand the environmental variable(s) that influence an individual’s behavior.
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Outcomes of ABA for Autism 0 5 10 15 20 25 30 35 0 5 10 15 20 25 30 35 40 45 Hours per Week of Treatment Increases in IQ Scores r = .79 p < .02
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Cost-Benefit Analysis of Early, Intensive ABA for Autism Average lifetime cost for a person with autism is over $4 million Average cost of Early, Intensive ABA is $150,000 over about 3 years Average lifetime savings from ABA Treatment is between $1.6 and $2.7 million
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Examples of ABA Edward and “go find” Small group instruction “hoping frogs”
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Examples of Relationship-Based Methods Early Start Denver Model ‘Paddy Feet’ Bubbles
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Early Intensive Behavioral and Developmental Interventions (EIBDI) Comprehensive (see Rogers and Vismara, 2008) Focus on several areas of functioning vs. skill specific intervention Draw from principles of Applied Behavior Analysis (ABA) Method and setting ABA umbrella term for learning principles/techniques Teach new behaviors, reduce challenging behaviors Systematic reinforcement ABA is a term existing for decades prior to specific adoption within autism intervention literature
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Early intensive behavioral and developmental interventions UCLA/Lovaas model & variants: Intensive intervention (18-36 hr) utilizing operant conditioning, emphasis on structure and discrete trial toward generalization of skills Variants of Early Intensive Behavioral Intervention (EIBI) Is this a category? Comprehensive approaches for children under 2: ABA principles within a developmental and relational framework Early Start Denver Model (ESDM) / Early social communication training : Range: Intensive intervention (15-20 hours) to lower levels Parent-training: Pivotal Response Training, Social Pragmatic Intervention, More than Words, etc.
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Where does this leave us now?
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Methodology is limiting our understandingof intervention impact / potential Lack of current evidence does not equal lack of effect or potential effect of treatmentSome current and available ASD interventions do make a tremendous impact for some childrenHow do we best serve children in our backyards?
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How do we choose and value treatments? Individualized intervention: What works for which children and why? What is the meaningful social and functional impact? Range of outcomes to be expected ? How do we value therapeutic changes? A changing landscape: Improved understanding of disorder Improved study and improved interventions Methodologically rigorous and meaningful investigation
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Questions?