Learning Outcomes. Talking To Physicians & Childcare Providers About Autism Early Identification: It Takes a Village

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1 Talking To Physicians & Childcare Providers About Autism Early Identification: It Takes a Village Elizabeth R. Crais, Ph.D., CCC-SLP Cara McComish, Ph.D, CCC-SLP Linda Watson, Ed.D., CCC-SLP Division of Speech & Hearing Sciences Medical School The University of North Carolina at Chapel Hill Marian Earls, M.D. Medical Director Guildford County Health Greensboro, NC Learning Outcomes Participants will be able to: Discuss behaviors which may indicate risk for autism in infants and young children Describe currently available screening tools and their pros and cons Define strategies for collaborating with and sharing screening information with other professionals Who Makes up the Village? Parents and other family members Early intervention professionals Pediatricians/nurses Primary care physicians/nurses Early care and education providers (ECEPS) Our focus today are the latter 3 groups Why Physicians and Early Care and Education Providers? Recent prevalence figures indicate 1/91 overall, 1/58 boys (Pediatrics, 2009) Public awareness Patient awareness Pressure for answers Physicians/Nurses and ECEPs on front line with parents NC ECEPs = fastest growing referral source to early intervention services Continuum of Potential Interface for SLPs Getting referrals from physicians & ECEPs Sending reports to both groups Making phone calls about an indiv. child Going for a meet & greet opportunity Offering in-service opportunities Community-wide efforts to engage all partners in screening process Where Are We Going Today? Quick overview of issues & barriers related to early identification Behaviors to look for in young children at risk for autism Surveillance & screening tools available Physician needs and resources ECEPs needs and resources Your ideas and efforts

2 What Do We Know About Autism? Neurological disorder, not an emotional disorder as once thought 4 times more prevalent in boys No known racial, ethnic, or social boundaries No relation to family income, lifestyle Some genetic linkages found in some families Typically appears during the first 3 years of life How Early Is Diagnosis? Diagnosis of children with autism typically occurs between 2 3+ years of age Diagnosis is rare before two years of age Literature shows enhanced outcomes with early identification and intervention Our ultimate goal is to identify children with autism even earlier But what are the barriers to earlier identification? Barriers To Early ID Relatively late identification has made it difficult to follow children from early ages to know course of early development Difficulty identifying behaviors that could be markers for signs of autism vs other disabilities Need to look for both absence of typical behaviors and presence of atypical behaviors Limited knowledge of developmental course of behaviors that may be common in young children (e.g., repetitive movements, mouthing) Screening For/Diagnosing Autism No blood, medical, genetic, neurological tests for screening/diagnosing autism Autism is screened/diagnosed behaviorally (observe/record behaviors present or absent, certain criteria reached) Surveillance by professionals Parent report of concerns Standardized screening tests Surveillance & Screening: AAP Guidelines (2007) Surveillance at every well-child visit and/or extra visit for concerns Family hx of relatives, esp. sibling with ASD Open-ended questions re: concerns Specific inquiries about social-emotional milestones ( Record developmental history Observations of professionals and parents Surveillance & Screening: AAP Guidelines Risk Factors Sibling with autism Parent concern Report of a concern of another caregiver such as a child care provider Physician concern 11

3 Surveillance & Screening: AAP Guidelines Follow-up Primary Care Autism Screening Referral Process for Infants and Toddlers MCHAT is Positive (+) OR Autism Surveillance yields 2 or more + risk factors Two or more risk factors parent education, referral for ASD evaluation & EI services, follow-up visit One risk factor, <18 months evaluate socialcommunication development One risk factor, >18 months use ASD specific screener ALL children at 18 & 24 months use ASD specific screener Any positive screen parent education, referral for ASD evaluation & EI services, follow-up visit 13 If Global Developmental Delay, Intellectual Disability is present, or Genetic or Neurologic disorder is suspected Consider referral to D & B Pediatrician Geneticist Neurologist CDSA Eligibility evaluation If developmental delay or established condition found IFSP Further Autism-specific evaluation as needed Continued Case Management, IFSP Continued Direct Services as indicated Primary Care Physician (PCP) is notified ASAP about the evaluation result and service plans in order to have a follow-up with the family. PCP shares results of Audiological Evaluation and other referrals (if any) with the CDSA as soon as results are reported. Audiology Evaluation No ASD or Developmental Delay found CSC or other community services (if renewed concern rerefer) Notes: Autism specific evaluations and/or confirmation of an autism diagnosis are influenced by the age of the child and findings; younger children and those with less significant symptoms are more difficult to diagnose. Why Not Just Surveillance? A concern by parent or physician is important Evidence suggests that action on these concerns is often delayed ( wait & see ) Absence of a concern doesn t mean there is not a problem The younger the child, the harder to recognize the red flags without a standardized tool Considerable evidence that surveillance alone, at least as typically used, results in underreferral of young children with DD including ASD 15 Parent & Physician Recognition of Symptoms Parent initial concerns (Chawarska et al., 2007) 14.7 m for Autism 20% at <11 m 36% at m 44% at >18 m Types of concerns Language & speech 71%/70% Social difficulties 61%/48% Medical probs./motor delays 29%/4% Stereotyped behaviors 17%/0% Pediatrician made observations of autistic-like behaviors in children later diagnosed(niehus & Lord, 2006) 10% of children with ASD during 1 st year 59% of children with ASD during 2 nd year (only ½ referred) 16 Psychometric Indices Psychometric Indices Screen + Screen - Total Condition + True Positive False Negative TP + FN (e.g., ASD or DD) Condition - False Positive True Negative FP +TN Totals TP + FP FN + TN Total N Sensitivity: % of children with ASD who screen positive=tp/(tp+fn) Screen + Screen - Total Condition + True Positive False Negative TP + FN (e.g., ASD or DD) Condition - False Positive True Negative FP +TN Totals TP + FP FN + TN Total N Sensitivity: % of children with ASD who screen positive=tp/(tp+fn) Specificity: % of children without ASD who screen negative =TN/(TN+FP)

4 Psychometric Indices Psychometric Indices Screen + Screen - Total Condition + True Positive False Negative TP + FN (e.g., ASD or DD) Condition - False Positive True Negative FP +TN Totals TP + FP FN + TN Total N Sensitivity: % of children with ASD who screen positive=tp/(tp+fn) Specificity: % of children without ASD who screen negative =TN/(TN+FP) PPV: % of children w/ positive screen who have ASD=TP/(TP+FP) Screen + Screen - Total Condition + True Positive False Negative TP + FN (e.g., ASD or DD) Condition - False Positive True Negative FP +TN Totals TP + FP FN + TN Total N Sensitivity: % of children with ASD who screen positive=tp/(tp+fn) Specificity: % of children without ASD who screen negative =TN/(TN+FP) PPV: % of children w/ positive screen who have ASD=TP/(TP+FP) NPV: % of children w/ negative screen who don t have ASD=TN/(TN+FN) Developmental Screening Sensitive to ASD in Toddlers Consider using: CSBS DP Infant-Toddler Checklist (Wetherby & Prizant, 2002) Screens for communication & symbolic behavior concerns; recommended for 9-24 months Parent completed questionnaire Appears to be sensitive to ASD across this age range, although not specific (Wetherby et al., 2004, 2008) Excellent way to break down behaviors of concern Download form & scoring Helpful guidelines to interpret scores Communication and Symbolic Behavior Scales Developmental Profile (CSBS DP ) Infant-Toddler Checklist (Wetherby & Prizant, 2002, Brookes Publishing) Communication and Symbolic Behavior Scales Developmental Profile (CSBS DP ) Infant-Toddler Checklist (Wetherby & Prizant, 2002, Brookes Publishing) Excellent Option Infant Toddler Checklist (Wetherby & Prizant,2002) Early screening has identified 6.83/1,000 children with autism(mean age of 15.7 months) With Good sensitivity and specificity

5 Why ASD-Specific Screening? Symptoms are recognized in majority of kids by 18 months 25-30% regression reported, usually between 18 & 24 months AAP does not endorse specific screeners for ASD General developmental screening tools may not tap the same domains E.g. 6/38 children screened positive by PEDS also screened positive on M-CHAT. 16/114 children screened negative by PEDS screened positive by M-CHAT (Pinto- Martin et al, 2008) Autism Specific Screener Currently the best evidence is available for the Modified Checklist for Autism (M-CHAT) as ASDspecific screener for 18 and 24 m & especially used with follow-up questions (Kleinman et al., 2008; Robins, 2008) But both CSBS-DP Infant-Toddler Checklist & MCHAT are time-efficient & are parentcompleted questionnaires 11/17/ Modified Checklist for Autism in Toddlers: MCHAT For months Questionnaire completed by parent 5-10 minutes to complete (parent) Simple Scoring Download form and scoring ing.pdf Modified Checklist for Autism (MCHAT) 1. Does your child enjoy being swung, bounced on your knee, etc.? (Yes No format) 2. Does your child take an interest in other children? 3. Does your child like climbing on things, such as up stairs? 4. Does your child enjoy playing peek-a-boo/hide-andseek? 5. Does your child ever pretend, for example, to talk on the phone or take care of a doll or other pretend things? 6. Does your child ever use his/her index finger to point, to ask for something? MCHAT Follow-up Interview Questions 1. You reported that does not enjoy being swung, bounced on your knee, etc. Is this still true? If no, then ask again, Then s/he does like to be bounced or swung? If yes, PASS If yes, When you swing or bounce him/her, how does s/he react? Laughs or smiles? Yes No Talks or babbles? Yes No Requests more by holding out her/his arms? Yes No If Yes, PASS. If no, FAIL Let s Chat about the M-CHAT With questionnaire alone, 5.5%-9.75 of children from general population fail (Kleinman et al, 2008; Robins, 2008) compared with 1/91 Questionnaire alone = large over-referral; PPV= (PPV = % of children screened positive who actually have ASD) Follow-up interview is available on Robins website (5-20 minutes); recommended for children scoring right at or just slightly over the cutoff 30

6 Let s Chat about the M-CHAT M-CHAT + interview: PPV= Most false positive cases referred after the M- CHAT + interview had significant language or global cognitive delays in need of parent educ., evaluation, EI & follow-up Failed screening indicates need for further evaluation Cautions re: Interpreting Screening Results in Toddlers Even with the best current practice, 50% of children who fail M-CHAT screening will not be diagnosed with an ASD Sensitivity estimated at True sensitivity and specificity for M-CHAT (and other screeners recommended in US) are unknown; requires knowledge of missed cases among children who screen negative (most not followed-up to see what happened) Thus, health care providers using Level 1 ASD screens should be VERY CAREFUL about making definitive statements to parents 32 Development of First Year Inventory (FYI) 63 items total 46 items: parents check never, seldom, sometimes, or often 14 multiple choice items 1 item on sound production 2 open-ended questions regarding concerns & unusual physical or medical characteristics FYI Sample Questions: Checklist & Multiple-choice Does your baby turn to look at you when you call your baby s name? Does your baby seem overly sensitive to your touch? When you introduce your baby to a new game (peek-a-boo, so-big, pattycake, etc.), how does your baby respond? a. Almost always joins in immediately without any help. b. Usually joins in, with a little help. c. Joins in only with a lot of help. d. Doesn t seem very interested in new baby games. What do you typically have to do to get your baby to look up from playing with a favorite toy? a. Just show him or her a different toy. b. Move, shake or make a noise with the different toy. c. Take the favorite toy away and give your baby the different toy. Normative Data Try-out version mailed to 5941 families (600 per month) based on birth records in NC Return rate of ~25-30% across months Normative data from parents of 1496 infants at 12 months of age Established preliminary cut-offs based on total score Children at high risk on FYI at 12 mos, brought in for testing at 3 years Diagnostic Outcome ASD diagnosis (n = 9) 6 confirmed through evaluation 3 confirmed through parental report Other diagnosis (n = 42) 32 reported on DCQ 10 determined by evaluation Other concerns (n = 78) 75 reported on DCQ 3 determined by evaluation No concerns (n = 569)

7 Identification of Other DD Positive FYI using combination Social-Comm & Sens-Reg cutoff: PPV =.33 (33% chance child will have ASD at age 3) 50% chance child will have diagnosis of DD at age 3 83% chance parents will report having concerns in one or more areas about child s development by age 3 NPV =.99 (neg screen & no ASD) More Autism Screening Tools SCQ (Social Communication Questionnaire) 4 years and older (>2yr old mental age) Sensitivity: 85-96% Specificity: 67-80% Parent completed questionnaire, 40 items(5-10 minutes) SRS (Social Responsiveness Scale) 4-18 years Parent and teacher completed scales, 65 items (15-20 minutes) Also rates severity Enhancing Observation Skills Use developmental milestones for typically developing children Identify key behaviors at specific ages documented by research as indicative of later diagnosis of autism Look for absence of certain behaviors Look for presence of certain behaviors Typical Development of Social & Communication Milestones Major milestones which are problematic in some 3-year-olds with autism develop in the typical child by months 3-6 months: emergence of reciprocity 6-9 months: response to name 9-12 months: follow attention of others; social referencing prior to approaching novel stimuli; good communication months: initiate joint attention; beginning verbal communication; functional play months: early pretend play; developing vocabulary of words used in different situations with more or less conventional meanings Functions of Communication Social interaction: initiating or sustaining a social game or routine, providing comfort, teasing, showing off Behavior regulation: regulate behavior of others to obtain an object, get them to carry out action, or stop someone from doing something Joint attention: direct other s attention in order to comment on an object or event, provide information on an object or event, or acknowledge shared attention to an object or event Key Features of Autism (ASD) Impairments in (a) social interaction, (b) communication, and (c) restricted range of interests and/or repetitive or stereotyped behaviors, interests, and activities.

8 ASD? At Age 2? Social Symptoms: Lack of responsiveness Abnormal eye contact Lack of facial expressions Limited shared enjoyment Limited interest in peek-a-boo/social games Poor imitation Poor peer relationships ASD? At Age 2? Communication Symptoms: Delayed speech/speech problems Loss of acquired words Doesn t attract attention to own activities No pointing to objects to share interest ASD? At Age 2? Unusual activities & interests: Unusual play or attachment to objects Over or under reaction to sensory stimuli Irregular sleep-arousal rhythm Unusual visual interests or sighting ASD? At 18 months? Joint attention diminished, often absent Failure to share interest with others (e.g., monitor gaze of others; show or give objects, look at books together) Little or no pointing to show objects/events Pointing to get things may be present Lack of sharing joy (except in tickle, roughhouse games) (Baird et al, 2000; Cassell et al., 2007; Landa et al., 2007; Robins et al., 2001; Wetherby et al. 2004) ASD? At 18 months? Simple pretend play not emerging Failure to respond to name Lack of appropriate gaze Unusual prosody (rhythm of speech awkward) Repetitive movements/posturing (Baird et al, 2000; Cassell et al., 2007; Landa et al., 2007; Robins et al., 2001; Wetherby et al. 2004) ASD? At 9-12 months? Social-Communicative Lack of response to name/multiple prompts required Limited gestures, especially non-routine gestures Poor eye contact/less mutual attending Limited affective range Lack of social smile Poor imitation (Baranek, 1999; Cassell et al., 2007; Watson et al., 2008; Zwaigenbaum et al. 2006)

9 ASD? At 9-12 months? Sensory-Motor/Sensory-Regulatory More mouthing More social touch aversions Less visual orientation to novel stimuli Difficulty shifting attention to new stimuli Tendency to fixate attention instead of actively explore Fewer goal directed behaviors & limited variety Extreme passivity with extreme distress reactions NICHD List of 5 Warning Behaviors Signaling Evaluation Does not babble or coo by 12 months Does not gesture (point, wave, reach) by 12 months Does not say single words by 16 months Does not say two-word phrases on his or her own by 24 months Has any loss of any language or social skill at any age. (Baranek, 1999; Cassell et al., 2007; Watson et al., 2008; Clinical Implications Gestures and early use of intentionality are important markers for later language. Some key gestures: show, give, point. Limited variety of gestures in infants with ASD. Continued use of contact gestures longer than expected (e.g., taking hand, pushing hand). Play is predictive: particularly play above relational (functional or higher), play directed toward others, & symbolic play. Talking to Physicians/Nurses: Getting Started Partner with local physician, champion Consider team presentation Choose advanced practice to start Gather background info on practice (e.g., how many birth-three well-child checkups, do they screen for dev. delay) Select content dependent on practice Talking to Physicians/Nurses: Content Overview 5 components of PDD & what is autism (3 core features) Show video clips (ASD Glossary) Review AAP (2007) guidelines Review risk factors & follow-up Discuss reasons for screening Talking to Physicians/Nurses Talk about screening/tools Talk about at-risk behaviors (observations) Provide web resources, national, state, and local Provide basic information for referral to EI services (e.g., how to, agencies, service coordination) & contact info!!!

10 Talking to Physicians/Nurses Give them a chance to talk about their positive/negative screening experiences Give them a chance to talk about their concerns (e.g., false positives, time to screen, follow-up) Plan follow-up if needed Talking to Early Education and Care Providers Autism Speaks has an excellent resource called Talking to Parents About Autism You can access the 15 min video via YouTube by searching for the title or at rents_action_kit.php#top Website includes an action kit with handouts for EECP providers to talk with parents about developmental screening Talking To Parents About ASD EECP providers and preschool teachers often share that their biggest challenge is having to talk to parents about the possibility that a child might have a DD or ASD Often the EECP provider may be the first person to notice that a child is not meeting developmental milestones or is acting in an unusual way when compared to peers If a EECP Provider Shares a Concern You Can Encourage Her/Him to: Take notice Trust instincts Prepare to act Take focus off speech and language, put focus on social skills and interactions with peers Information in next slides excerpted from the Autism Speaks website, Take Notice Trust Instincts The SLP can share with EECP providers that, while it s not their job to diagnosis ASDs, it is helpful for them to get familiar with red flags such as: Loss of language or social skills Child not participating in or enjoying pretend play Child not playing with peers Encourage EECP providers by saying, As a teacher you are tuned in to typical preschool aged child behavior- when a child acts in an unusual way on a consistent basis or is not meeting developmental milestones, document your observations of things that seem out of the ordinary. It s helpful to take notes to show the parents

11 Prepare to Act Noticing warning signs of DD or ASD is an indication that provider needs to talk with the family Remind them that they are familiar with the child, closely observed behavior; use as a focal point when talking to parents Consider cultural sensitivities What works when approaching families about concerns? First talk about strengths Remain objective this is what I have observed Focus on social skills not speech/language Don t pass judgments- do a lot of listening Show things child can do (role play with team) I understand you may not see some of these types of behaviors at home because it is a different setting, here s what I see at school Next Steps: Discussion: Invite caregivers to observe the child in the childcare setting Ask if they have talked with child s PCP and if he or she has noticed any concerns Recommend a developmental screening Be aware of local resources and share information about early intervention or referrals for screening or evaluation Maintain ongoing communication What if EECP s share concerns, but family is not concerned will develop in own time? Parents ask about PDD? What other questions or scenarios would you like to pose or discuss? Resources American Academy of Pediatrics CDC Learn the Signs/Act Early ( Autism Speaks ASD glossary MCHAT Ph.D..html Resources American Academy of Pediatrics CDC Learn the Signs/Act Early ( Autism Speaks ASD glossary MCHAT Ph.D..html

12 Additional Resources (Infant/Toddler Checklist & Scoring, ASD glossary) National Professional Development Center on Autism Spectrum Disorders (24 evidence-based practices, training modules, online course) ( Pearls.med.unc.edu (our website for articles, presentations) Additional Resources Caring for Children with ASD: A Resource Toolkit for Clinicians (AAP, 2008; $79.95/$69.95), months: Is Your One-Year Old Communicating with You? (AAP, 2004),