Early Intervention for Young Children with ASD: An Evidence-based Approach to Identification and Improving Outcomes Rebecca Landa, Ph.D., Director, Center for Autism and Related Disorders Virginia Creating Connections to Shining Stars July 22, 2013 Disclosures • None 2 Thank you • • • • NIH Autism Speaks Families and children who participate My wonderful staff 3 Focus of this talk: • Detection of autism spectrum disorders as early as possible – Early signs and trajectories • Screening • Early intervention: Early Achievements 4 Early Detection of ASD • Why? 5 Early Intervention is important because • Early experiences influence brain development • The brain is a thinking organ • It learns and grows by interacting with people and objects, through perception and action • Able to continually adapt and rewire itself • Constraints – need good intervention 6 Early experiences matter Richer, more diverse repertoire Learning Sustained engagement Bids for attention Attention from other Hopefully responsive: optimality of development Connection 7 Developmental Cascades More highly specified and effectively directed Bids for attention Attention from other Learning Sustained engagement Greater expansions in form and content Connection Rewarding Tomasello et al., 2005 8 Developmental Cascades Bids for attention Attenuated Learning Briefer Sustained engagement Ambiguous, poorly integrated Attention from other Less frequent Connection Less frequent 9 Importance of early detection of ASD • Early intervention experiences are designed to address core ASD deficits (Kasari et al., 2008; Landa et al., 2011) 10 We want this: Early Achievements Intervention: 1-year-olds Note: *Purposeful *Notice each other *Imitating *Sustained meaningful engagement *Sequences of meaningful, intentional action Landa, Holman, O’Niell, Stuart. (2011). Journal of Child Psychology and Psychiatry 11 To understand the earliest behavioral markers of ASD • Must begin in infancy, before we know the child will have ASD • Research designs for doing so: 12 Research Designs • Retrospective studies – Interview parents about the past (problems with memory of details) – Scoring home videos of older children diagnosed with ASD • Videos made when children were infants or toddlers 13 Problem with Retrospective Designs • Can’t control the context (cues, distractions, difficulty of task, camera angle) • Can’t give the child specialized tests targeting specific behaviors or abilities of interest • Can’t control the age 14 Research designs • Prospective studies – Highly efficient to study infants at increased genetic risk for ASD – Can control the • Age at time of assessment • Context (cues, camera angle, difficulty, distractions) • Types of tasks to study specific abilities 15 To understand ASD in infants and toddlers • Two groups studied: – High Risk (HR) for ASD: Infant siblings of children with ASD – Low Risk (LR) for ASD: No family history of ASD • Recently added a group at increased risk for delay, but less risk for ASD than HR infants: Preterm 16 High risk for ASD • High risk infants (younger sibs of children with ASD): • 18.7% will have ASD (Landa et al., 2006; Landa et al., 2007; Ozonoff et al., 2011) • 30% will have non-ASD language and social delays by the third birthday (Messinger et al., in press) 17 Assessment ages High Risk (HR) Low Risk (HR) 6m 10 m 14 m 18 m 24 m Rate confidence of presence of ASD at each age 18 30 m 36 m Outcome classifications Autism Diagnostic Observation Schedule + Clinical judgment ASD Intermediate (Broader Autism Phenotype) 36 months Unaffected 19 Main points to be addressed 1. When do the signs of ASD first appear? 2. What are those signs? 3. What is the course of development for infants and toddlers with ASD in the first 3 years of life? 20 What are the first signs of ASD? When do the signs of ASD appear? • At 6 months: – – – – Signs are subtle Most evident signs involve motor delay Temperament: Passive Social: Lower duration of self-generated looks to parent Yellow Flags 21 When do the signs of ASD appear? • At 6 months: – – – – Signs are subtle Most evident signs involve motor delay Temperament: Reactivity, Distractability Social: Lower duration of self-generated looks to parent 22 Typical head control: age 6 months *Baby is laid on flat surface *Make sure nothing of interest behind or above baby *Try to get baby’s attention *Gently pull on arms *Goal: Baby pulls self upward into sit with a little help 24 Evidence of poor postural control at age 6 months • N=58 sibs-A at mean age 6 months • Clinical judgment of head lag scored from videotapes of pull-to-sit item on Mullen GM Scale % with head lag 100 80 60 40 20 0 93% 59% 30% % with head lag ASD BAP Non Delay How is the motor system developing in children with and without ASD? • Participants – ASD n=52 – Non ASD n=152 • Tested at 6, 14, 24, 36 months • Mullen Scales of Early Learning (Mullen, 1995) – Fine Motor T score – Gross Motor T score • Delay: scoring at least 1.5 standard deviations below the test mean on either motor scale 26 % ASD and non ASD with motor delay from 6-36 months % with motor delay 70 60 50 40 ASD Non ASD 30 20 10 0 6 mo 14 mo 24 mo 36 mo Motor Delay: Fine Motor and/or Gross Motor T score <35 27 Examples of Mullen Early Motor Items Gross Motor Fine Motor Supports self on forearms when on tummy Grasp reflex Sits with support, head control Grasps peg touched to palm of hand (ulnar grasp) Rolls over Reaches for and grasps block (radial palmar grasp, no thumb) ** Holds on to fingers, pulls self to sit Transfers, bangs, drops 28 Examples Later Mullen Motor Items Gross Motor Fine Motor Balances on one foot Imitates 4-block train Runs, turns corner, stops Unscrews and screws nut and bolt Hops at least two times Strings beads 29 Clinical implication • Motor score on a standardized test is not sufficiently sensitive at age 6 months to detect developmental disruption in infants at risk for ASD • Quality of movement: – Postural control (head lag, changing positions) • Likely to affect quality of imitation, gesture 30 Trajectories in Sibs-A with and without ASD • Sibs-A n=204 • Low Risk Controls n=31 • Tested: – 6, 14, 18, 24, 30, 36 months • Measures: – Mullen Scales of Early Learning – Communication and Symbolic Behavior Scales Developmental Profile Landa, Gross, Stuart, & Faherty. (2013). Child Development. 31 Different onset patterns: 52 with ASD Early Diagnosed: At 14 months Later Diagnosed: After 14 months • 28 (51.8%) • 78.5% male • 42.8% parents concerned at age 6 mos • 70.4% concerned at age 14 months • 26 (48.2%) • 84.6% male • 29.4% parents concerned at 6 mos • 65.4% parents concerned at 14 mos • At 14 mos: language or social delay 32 IQ at Age 14 months 120 100 80 Early Dx Later Dx Non-ASD 60 40 20 0 IQ Mullen Early Learning Composite 33 Receptive Language Raw Scores •All groups WNL at 6 months 40 rlraw Score 30 •Absence of typical language growth spurt in ASD 10 20 •Plateau in Early dx group 6 14 18 24 30 36 Age (Months) Non-ASD group Later Dx ASD group Early Dx ASD group Landa, Gross, Stuart, Faherty. 2013. Child Development Frequency of Initiation of Joint Attention 35 Another aspect of joint attention: • Social attention: • Tuning in to others body language: – gesture – gaze cues • Understand that these cues ‘tell’ what the person is thinking about, what interests them • By looking at the object of their attention, you ‘share attention’ with them • This results in a moment of joint (shared) attention 36 Shared positive affect • When you look at someone and smile, you – Invite them to share something with you – Invite them to communicate with you – Make them feel that you want to connect with them 37 Frequency of Shared Positive Affect Landa, Gross, Stuart, Faherty. 2013. Child Development Heterogeneity in Trajectories of Sibs-A 70 60 50 Mullen T-score 70 60 50 40 30 20 Latent class analysis: Heterogeneity 40 6 14 18 24 30 20 30 36 6 14 18 24 Age (Months) Age (Months) n=46 (22.3%) n=24 (12%) Early Language & Outcome Fine Motor Delay 70 50 40 30 36 Developmental Slowing MSEL T scores 70 60 Mullen T-score 60 30 50 40 30 20 20 6 14 18 24 30 Age (Months) MSEL Fine Motor Landa, Stuart, MSELGross, Gross Motor Bauman, 2012, JCPP MSEL Visual Reception MSEL Receptive Language MSEL Expressive Language 36 6 14 18 24 Age (Months) 30 36 Within-phenotype proportions in diagnostic classes Group • Early •ASD N Accelerated Normative Delay then catch up Slowing 27 0 14.8 29.6 55.6 Later ASD 25 4 36 32 28 41 Clinical implications • Mid infancy (6 months): – Signs are subtle – Mostly motor delay – Nonspecific to ASD • Declining skills between 6 and 36 months • By 14 months, ASD signs clear in about half of children with ASD – Low social responsiveness and reciprocity – Infrequent initiation of joint attention and response to social cues – Language delay – Repetitive and stereotyped interests 42 Clinical implications • Screen early • Screen repeatedly in children with older sibling with ASD • Discuss parent concerns • Early intervention 43 Screening 44 Who might voice the first concerns? Parent, family member, friend Early Intervention provider or teacher Pediatrician 45 Screening • • • • Need multiple approaches Parent-initiated Health care professional (Pediatrician)-initiated Child care provider-initiated 46 Learn the Signs, Act Early • http://www.cdc.gov/ncbddd/actearly/ 9-minute tutorial on early signs of ASD • Autism.kennedykrieger.org 48 GOLD STANDARD DIAGNOSIS 36 mos Positive Negative “early” classification True Positives ASD positive False Positives “early” classification False Negatives True Negatives as Non-ASD negative SE =TP/TP+FN SP =TN/TN+FP% % really ASD who were % of non-ASD identified at younger age to children identified at have ASD younger age as NonASD PPV = TP/TP+FP % with positive test results who are really ASD NPV= TN/TN+FN My data: Prospective study of ASD • ASD n=49 – At every age, beginning at 14 months, CJ and confidence rating – Outcome classification made at 36 months • Non ASD n=189 AAP Screening Guidelines • All children be screened for DD during regular well-child doctor visits at: • 9, 18, and 24 or 30 months • Additional screening might be needed if increased risk due to preterm birth or low birth weight. • Screen for ASDs during regular well-child doctor visits at: • 18 & 24 months • Additional screening might be needed if high risk for ASDs (e.g., sibling with an ASD) or symptoms present. Modified Checklist for Autism in Toddlers (MCHAT) • • • • • Parent report? Targeted ages: Number of questions: Time to complete: Free to use? Yes 16-30 months 23 5-10 minutes Yes – Available through the M-CHAT website: https://www.mchat.org/ M-CHAT Studies Robins Study (2001) • • • • • Sample Size: 1283 Age Range:18-30 m Well visits Mean Age: 26 mo. Gold Standard Snow Study (2008) • • • • (SD= 14.1) • Sensitivity: 0.97 Specificity: 0.99 PPV: 0.68 NPV: 0.99 JADD Gold Standard – Clinical diagnosis based on IQ measures, VABS, ADOS, CARS, GARS, PDDBI – Psychological Evaluation • • • • Sample Size: 82 Age Range: 18-70 mo. Consecutive referrals possible PDD Mean Age: 42.7 mo. • • • • Sensitivity: 0.70 Specificity: 0.38 PPV: 0.79 NPV: 0.28 Autism M-CHAT Best7 • Score items: 2, 5, 7, 9, 14, 15, 20 Fail 2 of these=screen positive; need follow-up. • Interest in other ch; pretend; point; bring to show; response to name; RJA; wonder if child deaf • Robins et al., 2010: “M-CHAT Best7: A New Scoring Algorithm Improves Positive Predictive Power of the M-CHAT” – – – – – – – – Sample Size: 15,650 Age Range: 14-30 mo. Mean Age: 20.6 mo. (SD= 3.1) Gold Standard: Diagnostic evaluation Sensitivity: 0.86 Specificity: 0.99 PPV: 0.18, (0.61 with follow-up interview) NPV: Not assessed Early Detection of Autism and Social Communication Delays Rebecca Landa, Ph.D., CCC-SLP Kennedy Krieger Institute Baltimore, MD ©Rebecca Landa Detect Risk, Enrichment, Surveillance, Treatment • Screen: Social AND language delay • Set the bar low • Universal parent education about child development and responsive parenting • Culturally competent curricula for parent training • MD training (train the eye, what to do) • EI providers: need curriculum and strategies • Flexible models of intervention • Parent-to-parent Summary and Implications • Sibs-A: risk for early motor and language delay • Motor disruption already present at 6 months – Postural control – Grasping • Object exploration and play • Some of the children plateau or decline, with atypical features emerging ASD • Loss can come on at different times in different children with ASD; and affects language or social • Very few children with ASD have typical trajectories • Even fewer have typical trajectories if sx onset is early (by 14 m) 57 Implications • Theoretical, neurobiological, clinical implications • Early motor disruption, non specific but signal for need for developmental stimulation • Early motor disruption – Affects play/object exploration immediately – Related to language and social functioning later • Can’t consider standard scores • Must look at quality of behavior • At 6 months: postural control, initiating and shifting postures (Bhat, Galloway, Landa, 2012), grasping 58