What to Do If You Suspect a Child Has Autism Spectrum Disorder: Characteristics and Crucial Conversations

Transcription

1 What to Do If You Suspect a Child Has Autism Spectrum Disorder: Characteristics and Crucial Conversations Dawn Hendricks, Ph.D. Early Childhood Special Education Specialist Virginia Department of Education 1

2 Objectives Why it is important to screen for Autism Spectrum Disorder Characteristics of Autism Spectrum Disorder Whose role is it to screen The screening tools and process Steps after the screening Talking to parents

3 Why Screen for ASD?

4 Why Screen for ASD? Autism is the fastest growing developmental disorder in the U.S. 1 in 68 have been identified with autism spectrum disorder. Because early identification MATTERS to children to families to the community TO EVERYONE!

5 Autism and Early Intervention Significant improvement in social perception Significant improvements in brain function Early treatment sparks striking brain changes in autism Significant improvements in behavior Significant improvements in communication

6 What is ASD?

7 Forget the Stereotypes!

8 Myths & Stereotypes He can t have autism, he has such good eye contact! She can t have autism, she s so interested in people! He can t have autism, he s so affectionate! She can t have autism, she has such a big vocabulary! He can t have autism, he talks too much! She can t have autism, she s a girl!

9 Diagnostic and Statistical Manual of Mental Disorders 5 th Edition Autism Spectrum Disorder = Classic Autism, Asperger s Syndrome, Pervasive Developmental Disorder-Not-otherwise Specified

10 DSM-IV, TR DSM-5 Communication Social Communication Social Interaction Behavior Sensory Behavior Sensory

11 A. Social Communication (must meet all 3 criteria) Social Reciprocity Nonverbal Communication Age Referenced Relationships B. Restricted/Repetitive Behavior (must meet 2 of the 4 criteria) Repetitive Speech Repetitive Routines Restricted Interests Hypo/Hyper Reactive to Sensory Input

12 Atypical Communication Development/ Social Development Communication Language milestone delay 40% nonverbal Often regression between months Pragmatic communication Receptive language Social Detached, solitary Joint attention Emotional understanding / regulation Facial expressions, vocal inflection, gestures, tone Theory of Mind Play

13 Restricted and Repetitive Patterns of Behavior Behavior may be most visible symptom Adherence to routines, attachment to objects Stereotyped movements: spinning, hand flapping, pacing, drumming, toe walking Self-injurious behavior (biting, head banging) Sensory issues (hyper- or hyposensitive) Touch, odor, noise, visual, vestibular, proprioceptive

14 Aren t there other characteristics??? What other characteristics have you observed?

15 Video Bringing the Early Signs of Autism into Focus Kennedy Krieger OHpU

16 Red Flags Center for Disease Control Not respond to their name by 12 months of age Not point at objects to show interest (point at an airplane flying over) by 14 months Not play "pretend" games (pretend to "feed" a doll) by 18 months Avoid eye contact and want to be alone Have trouble understanding other people's feelings or talking about their own feelings Have delayed speech and language skills Repeat words or phrases over and over (echolalia) Give unrelated answers to questions Get upset by minor changes Have obsessive interests Flap their hands, rock their body, or spin in circles Have unusual reactions to the way things sound, smell, taste, look, or feel

17 Video Library: Interested in Learning More? Autism Speaks Video Library Virginia Commonwealth University Autism Center for Excellence

18 What is Screening and Whose Role is it?

19 What is the Responsibility of the Home CASE FINDING Visiting Provider? Participate in case finding (i.e., routine developmental surveillance of children to recognize risk factors and identify warning signs of ASD SCREENING Participate in the screening of the child who has risk factors and/or displays warning signs of ASD (i.e., able to conduct screenings to determine the need for diagnostic assessments)

20 The Role of the Pediatrician in Early Identification According to the American Academy of Pediatrics: Surveillance at every visit Routine ASD screen at 18 months and 24 months Accurate diagnosis possible at months, maybe earlier (Early Sibs studies) Parents first voice concerns around 18 months, but diagnosis is typically not until 4 years or older ALERT< ALERT Unfortunately, routine screening is not occurring

21 The Process for Screening

22 Screening Tools and Process

23 Screening Instrument ASD characteristics assessed *M-CHAT-R/F Measures joint attention, social interaction, imitation, interest to parents Pervasive Developmental Disorders Screening Test-II Primary Care Screener (PDDST-II PCS) Measures communication, social, and atypical behaviors Age Range months months Format Parent Questionnaire Parent Questionnaire # of Items 20 yes/no 22 yes/no Clinician Time 10 minutes minutes Scoring Pass/fail Pass/fail Sensitivity 90% 85-92% Specificity 96% 71-91% website Authors Robins, Fein, & Barton, 2009 Siegel, 2004 Cost Free online ~ $150.00

24 Screening Instrument Childhood Autism Spectrum Test (CAST) Social Communication Questionnaire (SCQ) ASD characteristics assessed Measures more subtle impairments of socialization, communication, and behavior in school age children Measures socialization, communication, and behavior in children with mental age of 2 years+ Age Range 4-11 years 4 years and older (mental age 2+) Format Questionnaire Questionnaire (Current and Lifetime versions) # of Items 37 yes/no 40 yes/no Clinician Time 10 minutes 10 minutes Scoring Cutoff score gives risk level Pass/fail Sensitivity % 85% Specificity 93-99% 75% website Authors Scott, Baron-Cohen, Bolton, & Brayne, 2002 Cost Free online ~$100 Rutter, Bailey, & Lord, 2003

25 Recommended Screening Tool by the American Academy of Pediatrics (AAP) Modified Checklist for Autism in Toddlers Revised with Follow-Up (M-CHAT-R/F)

26 What is the M-CHAT R/F? Feasible tool for screenings Can be administered and scored as part of a well-child check-up Little time required for screening and scoring No observation component (impractical for pediatric visits) 6 th grade reading level - can be given to all parents available in Spanish Parents may complete M-CHAT R independent of professional by answering yes/no questions Professional may need to complete follow-up interview Offered online for free

27 The M-CHAT-R/F is copyrighted but is freely available for clinical and research use and can be downloaded from the website below. CHAT/Official_M-CHAT_Website_files/M- CHAT-R_F.pdf

28

29 Only three questions with the answer as no 2, 5, Have you ever wondered if your child might be deaf? 5. Does your child make unusual finger movements near his or her eyes? (FOR EXAMPLE, does your child wiggle his or her fingers close to his or her eyes?) 12. Does your child get upset by everyday noises? (FOR EXAMPLE, does your child scream or cry to noise such as a vacuum cleaner or loud music?) 29

30 Total Score after M- CHAT-R Risk Level Outcome or Actions required 1-2 Low Risk 3-7 Medium Risk 8 or > High Risk Continue ASD surveillance Rescreen again in a year or if red flags are noted Perform M-CHAT Follow-Up Interview -If score 2 or > refer for diagnostic evaluation -If score 2 or < rescreen again in a year or if red flags are noted May bypass Follow-Up Interview Refer immediately for diagnostic evaluation and for services (Early Intervention / School Based)

31 What is the F The Follow-Up Interview 3-7 failed, perform Follow-Up Interview Each item on M-CHAT R has a corresponding interview question Ask the interview question for each item initially Failed Keep track of items that continue to be failed Based on parent/caregiver response you can change a fail to a pass

32 The MCHAT R/F Videos How to Administer y.cfm?id=6 How to Score

33 After the Screening

34 What are the Next Steps After Screening? POSITIVE SCREEN 1. Recommend for a comprehensive evaluation for ASD Children found to be at risk NEGATIVE SCREEN 1. May recommend for a comprehensive evaluation to assess presence of other developmental disability or delay 2. Continue with routine developmental and autism specific surveillance Children found not at risk with no concerns reported or observed Rescreen if red flags are observed Rescreen annually

35 Talking to Parents

36 Things you will never hear a parent say I wish it had taken more years to get a diagnosis My therapist should have lied to me all those years I wish no one had told me they had concerns

37 Communicating with Parents Autism Speaks Toolkit hat-autism/learn-signs/talkingparents-about-autism-action-kit

38 Talking with Parents: Autism Speaks Video eature=player_embedded&v=xaw UsXk4nD8

39

40 Next Steps Refer to their pediatrician for a formal screening Refer to Infant and Toddler Connection for an evaluation OR Refer to their local school for an evaluation

41 Early Intervention: Infant and Toddler Connection KNOW your local EI providers PARTNER with EI

42 School Based Services Ages 2+ Parent contacts neighborhood school

43 Communicating with Parents: What to Expect May not have any idea there are concerns May not be familiar with ASD or may have false beliefs about ASD May feel like you are pointing fingers or being judgmental of their parenting May not agree among themselves with what you are saying (Ex: mom agrees but dad does not!)

44 Communicating with Medical Providers Information to provide medical personnel Attend medical appointments when possible Need for a release to exchange information Help parents know how to communicate concerns!

45 The Three Ps: Helping Parents Communicate with Doctors Put everything in order. Prepare ahead of time. Practice what to say and how to say it.

46 Resources

47 Screening MCHAT M-CHAT R/F edocs/m-chat/m-chat-r_f.pdf?v=1 CAST SCQ Q_Current_up-to-5-years-old.pdf

48 Diagnosis Where to go Commonwealth Autism Services Resources services assessment centers 8

49 Places to Visit: Virginia Commonwealth University Autism Center for Excellence ( Early Intervention Professional Development Center ( Learn the Signs: Act Early ( tml

50 After the Diagnosis Tidewater Autism Society of America Newsletter and Resource Directory for Autism Family to Family Network State Resources Early Intervention/CPSE ( ) AAP Autism Tool Kit for Practitioners Place on list serv for care-connections

51 A U T I S M A. L. A. R. M. Autism is prevalent 1 out of 6 children are diagnosed with a developmental disorder and/or behavioral problem Approximately 1 in 150 children are diagnosed with an autism spectrum disorder Developmental disorders have subtle signs and may be easily missed Listen to parents Early signs of autism are often present before 18 months Parents usually DO have concerns that something is wrong Parents generally DO give accurate and quality information When parents do not spontaneously raise concerns, ask if they have any Act early Make screening and surveillance an important part of your practice (as endorsed by the AAP) Know the subtle differences between typical and atypical development Learn to recognize red flags Use validated screening tools and identify problems early Improve the quality of life for children and their families through early and appropriate intervention Refer To Early Intervention or a local school program (do not wait for a diagnosis) To an autism specialist, or team of specialists, immediately for a definitive diagnosis To audiology and rule out a hearing impairment To local community resources for help and family support Monitor Schedule a follow-up appointment to discuss concerns more thoroughly Look for other conditions known to be associated with autism (eg, seizures, GI, sleep, behavior) Educate parents and provide them with up-to-date information Advocate for families with local early intervention programs, schools, respite care agencies, and insurance companies Continue surveillance and watch for additional or late signs of autism and/or other developmental disorders Continue to provide a medical home For More Information: The recommendations in this document do not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate. August 2007 This project is funded by a cooperative agreement between the American Academy of Pediatrics and the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention.