1. Toddler Screening for Autism Spectrum Disorders: The Modified Checklist for Autism in Toddlers (M-CHAT) Diana L. Robins, Ph.D. Georgia State University drobins@gsu.edu www.mchatscreen.com

2. Pervasive Developmental Disorders Autistic Disorder (autism) Asperger’s Disorder Rett’s Disorder Childhood Disintegrative Disorder Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) Collectively called the autism spectrum or the PDD spectrum

3. DSM-IV Diagnostic Criteria for Autism Early Deficits in Language & Communication Impairments in Reciprocal Social Interaction Restrictive, Repetitive, Stereotyped Behavior

4. Autism Criteria: Social Impairment Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction Failure to develop peer relationships appropriate to developmental level Lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest) Lack of social or emotional reciprocity

5. Red Flags in Toddlers: Social Lack of pointing (esp. to declare interest) Reduced joint attention Failure to orient to parent’s face Reduced response to name or voice Lack of interest in peers Failure to brings things to show parent Reduced eye contact

6. Autism Criteria: Communication Deficits Delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime) In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others Stereotyped and repetitive use of language or idiosyncratic language Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

7. Red Flags in Toddlers: Communication Delay in, or total lack of, the development of spoken language is the MOST COMMON PRESENTING CONCERN, but not specific to ASD Stereotyped and repetitive use of language or idiosyncratic language

8. Red Flags in Toddlers: Play  Limited play skills Reduced or absent pretend play Reduced or absent imitative play

9. Autism Criteria: Restricted, Repetitive, Stereotyped Behaviors, Interests, & Activities Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus Apparently inflexible adherence to specific, nonfunctional routines or rituals Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements) Persistent preoccupation with parts of objects

10. Red Flags in Toddlers: Restricted, Repetitive, Stereotyped Behaviors, Interests, & Activities Often emerge later than symptoms in the social and communication domains When present in toddlers, generally the lower-order, or less sophisticated behaviors, rather than preoccupations and rituals, which may require more cognitive skills

11. Diagnostic Criteria for Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) Impairment(s) in Reciprocal Social Interaction AND one of the following: Early Deficit in Language & Communication OR Restrictive, Repetitive, Stereotyped Behavior

12. Motivation for Early Detection Severity of diagnosis Outcome improved by early intervention (Baird et al., 2001; Bryson, Rogers, & Fombonne, 2003; Dawson, Ashman, & Carver, 2000; Lord, 1995; Prizant & Wetherby, 1988) Practice Parameters (Filipek et al., 1999, 2000) emphasized need for improved early detection

13. Delay in Diagnosis Birth 12 mos24 mos36 mos Parents first concerned (15-22 mos) { { Child seen by specialist (20-27 mos) ? Often further delay until definitive diagnosis

14. ASD-specific factors that influence the success of early detection Heterogeneity in presentation Physicians’ time with children is brief Absence of typical behavior is challenging to detect Motor milestones are usually preserved Positive signs of ASD may develop later than social and communication deficits

15. AAP Screening Guidelines 2006 AAP Policy Statement (Pediatrics 118, 405-420) Surveillance at all well-child visits Broad developmental screening at 9, 18, and 24/30 months ASD-specific screening at 18 months Gupta et al. (2007) comment on Policy Statement (Pediatrics, 119, 152-153) ASD-specific screening at 18 and 24 months 2007 AAP Clinical Report (Johnson et al., Pediatrics 120, 1183-1215) recap of ASD screening recommendations

16. Need for Screening Tools Standardized Supplement professional observation or surveillance Clinical impressions are not sufficient (Johnson, 2007) Clear algorithms for referral to specialists for diagnostic evaluation are expected to reduce age of diagnosis, and facilitate onset of early intervention services

17. Available English-Language Toddler Screening Instruments Checklist for Autism in Toddlers (CHAT; Baron-Cohen et al., 1992, 1996) Pervasive Developmental Disorders Screening Test-II (PDDST-II; Siegel, 2004) Screening Tool for Autism in Two- Year-Olds (STAT; Stone et al., 2000, 2004) Social Communication Questionnaire (Rutter, Bailey, & Lord, 2003)

18. Available English-Language Toddler Screening Instruments, cont. Autism Observation Scale for Infants (Zwaigenbaum et al., 2008) Systematic Observation of Red Flags (Wetherby et al. 2004) Developmental Behavior Checklist, Early Screen (Gray et al., 2005) Quantitative Checklist for Autism in Toddlers (Allison et al., 2008) Modified Checklist for Autism in Toddlers (M-CHAT; Robins et al., 1999, 2001)

19. M-CHAT (Robins, Fein, & Barton, 1999) Eliminated CHAT observation section Expanded CHAT parent report section Literature Clinical judgment Age range: 16-30 months Administration time: 5-10 minutes Goal: Identify all ASD, not just autism 2 nd goal after Baird et al., 2000 CHAT paper published: improve sensitivity

20. 9 CHAT items

21. Follow-Up Interview Sample

22. How to Score the M-CHAT For all items except 11, 18, 20, & 22 a response of NO is a screen positive response Items 2, 7, 9, 13, 14, 15 are critical A child screens positive if the critical score is 2 or more OR if the total score is 3 or more Scoring instructions, template, and Excel scoring program available for download from www.mchatscreen.com

23. Overview of the M-CHAT Research in Multiple Low-Risk (Primary Care) Samples

24. Total Screened (N=10,837) Need Interview (N=899) AT RISK Evaluation (N=132 +29*) Not at Risk Pass (N=9938) Declined/ Excluded (N=169) ASD(N=50) Not at Risk Non-ASD (N=54) Pass (N=598) Declined (N=57) = 6-10% = 16-24% Kleinman et al., 2008; Pandey et al., 2008; Robins, 2008

25. Comparison between UConn and GSU Low-Risk Samples UConn N=6050 Pandey et al., 2008 GSU N=4797 Robins, 2008 Failed M-CHAT 6.74%9.71% Of those interviewed, failed interview 19.83%16.85% Of those evaluated based on M-CHAT and interview, diagnosed with ASD 43.28%56.76% PP V

26. Psychometric Properties: Sensitivity Ability to detect illness when truly present True positives/all ASD in sample True positives/True positives + misses TP/(TP+FN) Screen +Screen - ASDTPFN nonASDFPTN

27. Psychometric Properties: Positive Predictive Value Likelihood that positive result is a true positive case; Confidence that screen positive means significant risk of ASD True positives/all screen positives TP/(TP+FP) Screen +Screen - ASDTPFN nonASDFPTN

28. Other Findings Prevalence in this sample: 1 in 217 Most of the remaining 54 children flagged by M-CHAT + Interview had significant language or global developmental delays (6 typically developing) Cases who passed the M-CHAT but were flagged by the pediatrician did not improve detection of ASD

29. < Bachelor’s deg (n=376) ≥ Bachelor’s deg (n=380) % Failed M-CHAT Effects of Maternal Education on M-CHAT Screening Zaj et al., 2007 p=.001

30. % Failed Follow-up Interview Zaj et al., 2007 Maternal Education, cont. p=.000 < Bachelor’s deg (n=376) ≥ Bachelor’s deg (n=380)

31. Follow-up at age 4 1416 re-screened to date Only two possible missed cases detected so far 75% ASD cases retain diagnosis 25% no longer have ASD, although 60% of the “recovered” cases continue to have other mental health problems (Kleinman, Robins et al., 2008)

32. Psychometric Properties of the M-CHAT Sensitivity high, estimated in the 80- 90% range Specificity mid-high 90s PPV of M-CHAT alone is low (.1-.4) PPV of M-CHAT + Interview is moderate (.5-.6) Kleinman et al., 2008; Pandey et al., 2008; Robins, 2008

33. Goals of the Ongoing M-CHAT Study Screen an additional 20,000 children over the next 4-5 years (half in metro- Atlanta, half in Connecticut) Refine the M-CHAT Better characterize ASD in toddlers to facilitate early detection of ASDs & early intervention

34. Practical Issues in Screening for ASD Who to screen: everyone When to screen: 18 and 24-month well- child visits, PLUS other ages when surveillance indicates ASD concerns How to screen: use a standardized, validated instrument

35. Incorporate Screening in the Primary Care Setting Parents complete screen prior to, or at beginning of, well-child check-up Physician or other healthcare professional reviews results during visit Respond immediately to screen positive cases

36. How to Respond to a Screen Positive Case Refer to a specialist for diagnosis Psychologist Developmental pediatrician Autism centers Refer to early intervention Babies Can’t Wait Private providers Coordinate care

37. Georgia State University Current Undergrads: Rebecca Bosch, April Coignard,Lora Henderson, Mirjana Ivanisevic, Amy Lasher, Molly Locklear, Robert Rivera, Janice Taylor, Sheniece Willis, Amber Wimsatt, Shelly Zody Previous lab members who contributed to the M-CHAT study: Assata Abayomi, Lyntovia Ashe, Nicolle Angeli, Jasmine Brigham, Laura Burch, Esther Choi, Leo Eng, Lama Farran, Wendy Greenway, Shelley Hinkle, Sean Hirt, Margaret Jones, Puja Joshi, Amy Lasher, Cassie Lovett, Melissa Nikolic, Christina Parfene, Ashley Proctor, Corey Reed, Ali Scott, Catherine Shelton, Gina Vanegas, Lisa Wiggins Center for Behavioral Neuroscience, NSF Agreement # IBN-9876754 2R01HD 035612, R01HD 039961, GSU-CDC Seed Grant Current postdocs, grad students and postbacs: Sharlet Anderson Margaret Banks Julia Juechter Meena Khowaja Susan McManus Kimberly Oliver Vivian Piazza Agata Rozga Noelle Santorelli Jamie Zaj Diana L. Robins, Ph.D.

38. UConn Acknowledgements National Institute of Child Health and Development Maternal and Child Health Bureau National Alliance for Autism Research/Autism Speaks National Institute of Mental Health U.S. Department of Education UConn Research Foundation Deborah Fein, Ph.D. Marianne Barton, Ph.D. James Green, Ph.D. Thyde Dumont-Mathieu, M.D. Hilary C. Boorstein, B.A. Pamela Ventola, Ph.D. Emma L. Esser, M.A. Sarah Hodgson, Ph.D. Jamie Kleinman, Ph.D. Gail Marshia, M.S.W. Juhi Pandey, Ph.D. Michael A. Rosenthal, M.A. Saasha Sutera, M.A. Alyssa D. Verbalis, M.A. Leandra B. Wilson, M.A. Eva Troyb, B.A. Katelin Carr, B.A.