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Early Identification of Infants and Toddlers With Autism and Other Developmental Disabilities January 2012 Albany, New York Autism Spectrum Disorders in Young Children: The Background, the Basics, and the Behaviors Patricia Towle, Ph.D. Westchester Institute for Human Development The Background •Current prevalence estimates •Current push for early identification •The validity of early identification/diagnoses •How early can we recognize or diagnose? The Background •Current prevalence estimates • 1/150 children • 3-4 boys for every girl • this includes the broad spectrum from severe to mild Source: CDC--Morbidity and Mortality Weekly Dec 12, 2009 The Background •Push for early intervention • Early intervention works! • The earlier, the better • The closer to 2 years, the better Early detection: Why is it so important? Early intervention works! Supports development ->better foundation-> supports higher levels of independence later Starts caregivers with their advocacy training-the sooner, the better Understanding needs, learning the system, accessing resources, impacting on the system • Pediatrician, family medicine and primary care provider in key role to refer parents for evaluations as early as possible The Background •Are early diagnoses reliable and valid? Summary of studies… Author, Date Goal Subjects Followed From – To Results Cox, 1999 Predictive validity of ADI-R 45 Compared different ASD risk levels 20 mos – 42 mos Diagnosis of ASD at 20 months is predicted to be highly sensitive and stable Diagnostic stability in children under 3 years 25 Aut, 12 PDD-NOS 31.4 mos – 45.0 mos Stability seen in 92+% Comparison of outcomes between Aut and Asp 46 Aut 20 Asp 4-6 years – 6-8 years Diagnosis of Aut and Asp remained stable Follow-up of children with ASDlike symptoms 18 with language delay and Aut features 4 years 4 mos – 8 years 7 mos All were diagnosed with an ASD (Aut, Atyp Aut, Atyp Aut with lang. delay) Stone, 1999 Szatmari, 2000 Michelotti, 2002 Summary of studies cont… Author, Date Goal Subjects Followed From – To Results Moore, 2003 Diagnostic stability 16 Aut 3 Atyp Aut 1 Lang disorder 2 years 10 mos – 4 years 5 mos All diagnosed with Aut or Atyp Aut retained ASD diagnosis 59 ASD Freeman, 2003 Diagnostic stability 2-5 years – 4-6 years Early ASD diagnosis remained stable Eaves, 2004 Diagnostic stability 49 with characteristics of Aut 2 years 9 mos – 4 years 11 mos 97% Aut retained ASD 77% PDD-NOS retained ASD 29 with Aut Charman, 2005 Diagnostic stability 2 years – 7 years Standard measures at age 2 years did not predict outcomes at 7 years, but measures at age 3 years were predictive Diagnostic stability 48 with Aut 3 years 11 mo – 19 years 96% retained diagnosis through adolescence/early adulthood McGovern, 2005 The Background Yes, early diagnoses are reliable and valid. •80-90% of children id’d as toddlers or preschoolers remain on “the spectrum” into school age years •Many young children who have symptoms within the profile of ASD but don’t meet full criteria also end up with an ASD diagnosis •Young children with milder presentations are slightly more likely to change diagnosis from early to later The Background How early is early identification? 3 years – no problem (except for especially mild and complex cases) 24 months – most can be dxed by now 18 - 20 months – many can be 14-15 months – for some, strong risk can be established 12 months – for a few, strong risk can be established There are different developmental trajectories of ASD symptoms in children Three major patterns of symptom emergence: Different from the start (never really develop social linguistic skills) Plateau and fade (13 – 15 months) More clear regression (15-20 months, 20-35 %) in second year Patterns in between The Basics • Current Terminology • A Spectrum Disorder: The Issues • The Diagnostic Criteria • What Autism Isn’t Current Terminology The Basics The Confusing Array : Pervasive PDD Developmental Infantile Disorder Autism PDD-NOS Asperger syndrome Atypical Autism CDD Autism Spectrum Disorder The Basics Current Terminology Professional Autism Spectrum Disorder Vs. Diagnostic The Pervasive Developmental Disorders The Basics Current Terminology Manual for diagnosing all mental health and developmental disorders in childhood and adulthood Diagnostic and Statistical Manual of Mental Disorders The Basics The Pervasive Developmental Disorders Autistic Disorder Asperger Syndrome PDD-NOS Rett Syndrome Childhood Disintegrative Disorder The Basics The Pervasive Developmental Disorders Autistic Disorder “Core Disorder” Approx 50% of PDDs- wide range of IQ 15% have some identifiable genetic disorder, for example FraX 30% have seizure disorder PDD-NOS Milder version “Subthreshold” Asperger Syndrome Aspergers - social problems without the same degree of language problems Most have average to above average IQ The Basics The issues with a “Spectrum Disorder” 1. A continuum of Severity The Pervasive Developmental Disorders Autistic Disorder More severe PDD-NOS Asperger Syndrome More Mild The Basics The issues with a “Spectrum Disorder” 2. The interface with cognitive delay The Pervasive Developmental Disorders Autistic Disorder More severe PDD-NOS Asperger Syndrome More Mild The Basics 2. The interface of symptom severity with cognitive delay Low Symptom Cognitive Functioning High Low High Severity High Low Very Mild Autism/ PDD-NOS/ Aspergers High Functioning Autism Cognitive Functioning Symptom Severity Low Functioning Autism ID (MR) with Autistic-like features Low High The Basics The issues with a “Spectrum Disorder” 3. Variable symptom presentation The Pervasive Developmental Disorders Autistic Disorder More severe PDD-NOS Asperger Syndrome More Mild The Basics Autism Spectrum Disorder: The Three Symptom Domains Social Interaction Communication Repetitive Behaviors ASD Profile of Behaviors The Basics The Three DSM-IV Symptom Domains Social Interaction 1. 2. 3. 4. Impairment in nonverbal behaviors to regulate social interactions Failure to develop peer relations Lack of spontaneous sharing of emotions Lack of reciprocity Communication 1. 2. 3. 4. Delay in development of spoken language Lack of ability to sustain conversation Atypical language features Lack or reduced social or pretend play Repetitive Behaviors 1. 2. 3. 4. Preoccupation with unusual pattern of behavior Inflexible adherence to routine Stereotyped, repetitive mannerisms Preoccupation with parts of objects The issues with a “Spectrum Disorder” Three Symptom Domains: Children can have different degrees of symptoms across them Social Interaction severe Communication Repetitive Bhvrs severe mild severe mild mild The issues with a “Spectrum Disorder” AUTISM SPECTRUM DISORDER Communication social language difficulties Social Interaction Repetitive Behaviors Restricted, repetitive Difficulties initiating and maintaining social play underdeveloped for age interaction 3. Variable symptom presentation AUTISM SPECTRUM DISORDER Communication Social Interaction They may be better with highly familiar people in very familiar routines or favorite activities Great unevenness across people and settings is a feature of ASD The Behaviors •Social Interaction •Communication •Repetitive Behaviors Social Interaction Behaviors What are the COMPONENTS? 1. Social Interest: How does a child show that they are interested in and “tuned in” to other people? 2. Emotional Expression or Signaling: How does a child share emotions and how “readable” are they? 3. Capacity for Interaction: How much “back and forth” can they do? The Social Interest Component: How do they show they are interested in and tuned in to others? Seeks Proximity: How “In the Mix” is the child? Seeks Proximity: vs. Indifference or Avoidance Stays physically close if comfortable The Social Interest Component Seeks Proximity: How “In the Mix” is the child? Indifference or Avoidance Stays with others but does not interact Off by himself; may take off when others come near The Social Interest Component Eye Contact1: Gives frequent eye contact Typical eye contact use vs. Avoidance of, reduced, or impersonal eye contact The Social Interest Component Eye Contact2: Monitors partner’s eyes & face for reactions Monitors eyes and face vs. Does not monitor of others The Social Interest Component Eye Contact2: Monitors partner’s eyes for reactions The Social Interest Component Social Initiation: How does the child “get something going” with another person? Social Initiation The Social Interest Component Social Responding: How does the child react to social bids from another person? The Social Interest Component Social Responding The Social Interest Component Social Responding Social Interaction Behaviors What are the COMPONENTS? 1. Social Interest: How does a child show that they are interested in and “tuned in” to other people? 2. Emotional Expression or Signaling: How does a child share emotions and how “readable” are they? 3. Capacity for Interaction: How much “back and forth” can they do?