Slide 1 Early Identification and Intervention for Autism Spectrum Disorders Washington Speech-Language Hearing Association Annette Estes October 8-10, 2015 Slide 2 Overview What is an Autism Spectrum Disorder (ASD)? When can we first see ASD? Current research on early identification What can we do? Current research on early intervention Long-term outcomes of early intervention Putting research into practice Slide 3 Autism Spectrum Disorder (ASD) ASD is a neurodevelopmental disorder 1 The collection of symptoms vary from individual to individual 2 Prevalence: 1 in 68; 1 in 42 boys to 1 in 189 girls Co-occurring disorders include: Intellectual disability, ADHD, Learning Disorders, Mood Disorders, Speech Disorders http://www.cdc.gov/ncbddd/autism/index.html 1 DSM-V, 2013; 2 Siegel, 1996
Slide 4 Diagnosis of Autism Spectrum Disorder: DSM-5 *Social & Communication Deficits *Fixated Interests *Repetitive Behaviors *Rigidity *Hyper-/Hypo- Sensory Differences *Slide adapted from Jennifer Gerdts, Ph.D. Slide 5 Slide 6 Early risk signs: 12-24 months of age Social Less social orienting Less initiation of social interaction Less sustained engagement Less coordinated engagement Communication Limited gestures Delayed language milestones possible Repetitive Behavior* Present but mild Repetitive play with objects (*RRB- Wolff, JJ., Botteron, KN, Dager, SR, Elison, JT, Estes, AM, Gu, H., Hazlett, HC, Pandey, J., Paterson, SJ, Schultz, RT, Zwaigenbaum, L., Piven, J. Longitudinal patterns of repetitive behavior in toddlers with autism. Journal of Child Psychology and Psychiatry, doi: 10.1111/jcpp.12207 (epub ahead of print)
Slide 7 IBIS (Infant Brain Imaging Study) Network NIH Autism Center of Excellence (www.ibis-network.org) Piven, PI UW: Dager, Estes Data Core: Evans Wash U: Botteron, McKinstry Image processing: Gehrig, Styner CHOP: Schultz, Paterson Behavioral Core: Estes, Zwaigenbaum UNC: Piven, Hazlett University of Alberta McGill University University of Washington Children s Hospital of Philadelphia University of Utah Washington University University of North Carolina Slide 8 IBIS-Infant Brain Imaging Study Focus on infants with older siblings with autism Recurrence risk for infants with older siblings with ASD about 20% (e.g., Ozonoff et al, 2011) Risk for other learning and developmental difficulties about 30% (Messinger et al., 2013) Assess and monitor infants at-risk before symptoms emerge Slide 9 IBIS Research Design 6 month 12 month Devel. evaluation Devel. evaluation MRI MRI Clinical feedback Clinical feedback Genetic testing 24 month Diagnostic evaluation MRI Clinical feedback
Slide 10 Development in infants at high-risk for ASD in the first two years of life N = 222 N = 49 N =107 N = 4 (Estes et al., 2015, Behavioral, cognitive, and adaptive development in infants with autism spectrum disorder in the first two years of life. Journal of Neuro Dev Disorders) Slide 11 Cognitive Development: Mullen Scales of Early Learning Mullen Early Learning Composite score Visual Reception Expressive Language Receptive Language Fine Motor Gross Motor Slide 12 Gross motor trajectories + group trajectory differences - Increase in differences over time + differences at 6 months
Slide 13 Visual reception trajectories + group trajectory differences + Increase in differences over time + differences at 6 months Slide 14 Adaptive Functioning: Vineland Adaptive Behavior Scales Vineland Adaptive Behavior Composite Communication Social Daily Living Skills Motor Slide 15 Adaptive functioning: Composite + group trajectory differences + increase in differences + differences at 6 months
Slide 16 Adaptive functioning: Motor + group trajectory differences - increase in differences over time + differences at 6 months Slide 17 IBIS 6 MONTH-OLD DTI RESULTS: HR+ VS HR- Wolff et al, AJP- 2014 Slide 18 IBIS findings: developmental differences detected by 6 months of age Development may differ as early as 6 months Motor development Visual reception/non-verbal problem solving Alterations in development are not yet clinically significant delays
Slide 19 Early diagnosis Early risk-signs typically precede the full syndrome The full ASD syndrome presents in almost all children by 36 months of age Some babies have the full syndrome before 12 months Most babies can be diagnosed by 24 months Average age of diagnosis in the US is 4-6 years 4 year gap from symptoms to diagnosis Over 1 year gap between first evaluation and diagnosis Most children don t have access to high quality early intervention for ASD Slide 20 Age of onset vs age of diagnosis Fully manifest ASD symptom expression at 9 months is rare, but possible Most children show signs by 24 months Median age of first Fully manifest diagnosis: ASD symptom expression 5 years starting at 36 old* months or later is rare, and likely due to missed earlier signs 9 mos Age of full 36 mos expression of ASD symptoms *National Center for Health Statistics databrief, 2012 Slide 21 What can we do? Start intervention as soon as possible after ASD symptoms emerge Early identification allows early intervention Early intervention = improved outcomes Early intervention reduces ASD symptoms in children Provide intervention and support across the lifespan People with ASD usually need support at all steps, school age through adults
Slide 22 Published efficacy findings of comprehensive Interventions for children under age 3 model design outcomes Remington 2007 Wetherby and Woods 2006 Dawson et al 2010 Lovaas DTT Community tx ++IQ, language group, 44 ss Early Social Community tx ++on commun. Interaction group, n=17 targets ESDM RCT, 48 ss ++IQ, language, AB, sx Slide 23 The Early Start Denver Model (ESDM) Slide 24 What is the ESDM? Curriculum Specific teaching practices For home programs, group programs, parent training, or disciplinary therapies
Slide 25 Intervention Throughout the Day Toddlers interact all day long 1:1 interactions With peers With parents*** In preschool Slide 26 Early intervention improves outcomes (Dawson et al., 2010, Pediatrics) (Estes et al., 2015, JAACAP) Slide 27 Study design 48 toddlers with ASD, ages 18-30 months Randomized to ESDM or Community intervention as usual Provided with annual diagnosis and developmental evaluations ESDM group offered 20 hrs per week in home 1:1 treatment and 2 parent training sessions per month COM group received individualized recommendations based on research evaluation and families pursued intervention in the community.
Slide 28 Child outcomes after comprehensive intensive early intervention (Dawson et al., 2010) Intervention with ESDM for 1-2 years begun before 30 months was effective in improving IQ improving communication reducing diagnostic severity Slide 29 Child outcomes at age 6: 2 years after early intervention is over (NIH and Autism Speaks, U54MH066399, Estes, PI) Slide 30 Participants The same children who were randomized to ESDM or community intervention beginning at 18-30 months of age Thirty-nine children available for follow-up (ESDM n=21; COM n=18) 6 years of age at follow-up 72% Caucasian, 9 girls (30 boys) Mothers on the whole were highly educated
Slide 31 Cognitive changesage 2, 3, 4, 6 years Slide 32 Cognitive changesage 2, 3, 4, 6 years ES 0.18 0.61 0.58 0.42 T1/18mos T2 T3 T4/age 6 Slide 33 Autism symptom severityage 2, 3, 4, 6 years ES 0.17 0.42 0.18 0.60 T1/18 mos T2 T3 T4/age 6
Slide 34 ESDM COM T1 AD PDD-NOS baseline diagnosis AD PDD-NOS 21 Diagnostic outcomes 3 14 7 T3/4 year old 2 1 outcome diag 15 1 5 0 AD PDD AD PDD AD PDD 12 7 2 T4/6 year old follow-up dx** AD PDD No Dx **Attrition age 6 AD PDD No Dx 3 ESDM, 3 COM 18 AD 6 14 4 0 PDD Slide 35 Summary Early intervention may have lasting effects Gains maintained 2 years post treatment Evidence for continued gains post EI 4 years old (end of intervention)- No group differences in ASD symptom severity 6 years old (2 yrs post intervention) Group differences in ASD symptom severity (Estes et al., 2015, JAACAP) Slide 36 Discussion The ESDM group showed improved core symptoms from 4-6 years age- at the same time as receiving significantly less intervention Both the Community and ESDM groups increased intellectual ability from 4-6 years old Future research is needed with families who are less educated, lower resource, rural and from multiple different cultures
Slide 37 We gratefully acknowledge the families who have participated in these studies AND our funding agencies NIH & Autism Speaks Slide 38 Clinical Services UW Autism Center Mission Research Training Slide 39 Research to Practice UW AC Infant Clinic Assess and monitor development in infants at-risk for ASD Provide very early diagnosis for infants under 24 months Offer seamless transition to individualized intervention as soon as ASD symptoms emerge
Slide 40 Research to Practice Early Intervention Services Evidence-based Applied Behavior Analysis (ABA) geared to the developmental level of the child Individualized in-home programs and short-term problem-focused treatment Team of trained paraprofessionals deliver in-home intervention under supervision Support parents as they build a team tailored to the needs of their child and family Train Registered Behavior Technicians (RBTs) Slide 41 Research to Practice Apex Summer Camp Evidence-based program Age 6-12 years of age Children with ASD, ADHD, siblings and peers Over 80 campers Over 40 counselors and staff Weekly Booster Camp during the school year Magic the Gathering pilot program for 12-16 year olds with ASD