Early Identification of Infants and Toddlers With Autism and Other Developmental Disabilities January 2012 Albany, New York Patricia Towle, Ph.D. Westchester Institute for Human Development Autism Spectrum Disorders in Young Children: The Background, the Basics, and the Behaviors

The Background Current prevalence estimates Current push for early identification The validity of early identification/diagnoses How early can we recognize or diagnose?

Current prevalence estimates The Background 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

Push for early intervention The Background 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

Are early diagnoses reliable and valid? The Background

Summary of studies… Author, DateGoalSubjectsFollowed 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 Stone, 1999 Diagnostic stability in children under 3 years 25 Aut, 12 PDD-NOS 31.4 mos – 45.0 mos Stability seen in 92+% Szatmari, 2000 Comparison of outcomes between Aut and Asp 46 Aut 20 Asp 4-6 years – 6-8 years Diagnosis of Aut and Asp remained stable Michelotti, 2002 Follow-up of children with ASD- like 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)

Summary of studies cont… Author, DateGoalSubjectsFollowed 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 Freeman, 2003 Diagnostic stability 59 ASD2-5 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 Charman, 2005 Diagnostic stability 29 with Aut2 years – 7 years Standard measures at age 2 years did not predict outcomes at 7 years, but measures at age 3 years were predictive McGovern, 2005 Diagnostic stability 48 with Aut3 years 11 mo – 19 years 96% retained diagnosis through adolescence/early adulthood

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 Yes, early diagnoses are reliable and valid. The Background

3 years – no problem (except for especially mild and complex cases) 24 months – most can be dxed by now months – many can be months – for some, strong risk can be established 12 months – for a few, strong risk can be established How early is early identification? The Background

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, %) in second year Patterns in between

The Basics Current Terminology A Spectrum Disorder: The Issues The Diagnostic Criteria What Autism Isn’t

The Confusing Array : PDD-NOS Atypical Autism Asperger syndrome PDD Pervasive Developmental Disorder Infantile Autism Autism Spectrum Disorder CDD The Basics Current Terminology

Professional Vs. Diagnostic Autism Spectrum Disorder 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 Current Terminology

The Pervasive Developmental Disorders Autistic Disorder Asperger Syndrome PDD-NOS Rett Syndrome Childhood Disintegrative Disorder The Basics

The Pervasive Developmental Disorders Autistic Disorder Asperger Syndrome PDD-NOS “Core Disorder” Approx 50% of PDDs- wide range of IQ 15% have some identifiable genetic disorder, for example FraX 30% have seizure disorder The Basics Milder version “Subthreshold” Aspergers - social problems without the same degree of language problems Most have average to above average IQ

The Pervasive Developmental Disorders Autistic Disorder Asperger Syndrome PDD-NOS The Basics The issues with a “Spectrum Disorder” 1. A continuum of Severity More severe More Mild

The Pervasive Developmental Disorders Autistic Disorder Asperger Syndrome PDD-NOS The Basics The issues with a “Spectrum Disorder” 2. The interface with cognitive delay More severe More Mild

Cognitive Functioning High Low High Low Symptom Severity The Basics 2. The interface of symptom severity with cognitive delay

Cognitive Functioning High Low High Low SymptomSeverity Low Functioning Autism High Functioning Autism ID (MR) with Autistic-like features Very Mild Autism/ PDD-NOS/ Aspergers

The Pervasive Developmental Disorders Autistic Disorder Asperger Syndrome PDD-NOS The Basics The issues with a “Spectrum Disorder” 3. Variable symptom presentation More severe More Mild

Autism Spectrum Disorder: The Three Symptom Domains Social InteractionCommunicationRepetitive Behaviors The Basics

ASD Profile of Behaviors Social InteractionCommunicationRepetitive Behaviors 1.Impairment in nonverbal behaviors to regulate social interactions 2.Failure to develop peer relations 3.Lack of spontaneous sharing of emotions 4.Lack of reciprocity 1.Delay in development of spoken language 2.Lack of ability to sustain conversation 3.Atypical language features 4.Lack or reduced social or pretend play 1.Preoccupation with unusual pattern of behavior 2.Inflexible adherence to routine 3.Stereotyped, repetitive mannerisms 4.Preoccupation with parts of objects The Three DSM-IV Symptom Domains The Basics

Three Symptom Domains: Children can have different degrees of symptoms across them Social Interaction Communication Repetitive Bhvrs severe mild The issues with a “Spectrum Disorder”

Communication Social Interaction Repetitive Behaviors AUTISM SPECTRUM DISORDER social language difficulties Difficulties initiating and maintaining social interaction Restricted, repetitive play underdeveloped for age The issues with a “Spectrum Disorder”

AUTISM SPECTRUM DISORDER 3. Variable symptom presentation 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?

Seeks Proximity: How “In the Mix” is the child? Seeks Proximity: vs. Indifference or Avoidance The Social Interest Component: How do they show they are interested in and tuned in to others? Stays physically close if comfortable

Seeks Proximity: How “In the Mix” is the child? Indifference or Avoidance The Social Interest Component Off by himself; may take off when others come near Stays with others but does not interact

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? The Social Interest Component

Social Initiation

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 The Social Interest Component

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?