Autism Spectrum Disorders

1. Autism Spectrum Disorders The MCH Perspective in Illinois Model Programs

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3. Critical Supporting Elements Primary Care Physician Building Better Lives for All Children with a Medical Home where care is: • Accessible • Family-Centered • Comprehensive • Continuous • Coordinated • Compassionate • Culturally-competent and for which the PCP: Shares Responsibility

4. Family-Professional Partnership Foundation • The primary care physician (PCP) and other health care providers: • ·Know the child’s health history • ·Listen to the parents’ and child’s concerns and involves them in decision- making • ·Share a trusting, collaborative relationship with the family and • ·Treat the child with compassion and understanding • Parents and child: • Are comfortable sharing concerns and questions with the child’s primary care physician and other health providers. •  Routinely communicate their child's needs and family priorities to the primary care physician, who facilitates communication between the family and other health care providers when necessary.

5. http://www.medicalhomeinfo.org/tools/care_notebook.html

6. http://www.medicalhomeinfo.org/tools/care_notebook.html

7. 6 Major Sections http://www.medicalhomeinfo.org/tools/care_notebook.html

8. 6 Major Sections

10. State from which this version came from.

11. Contact cnonufer@uic.edu for a copy of the taxonomy database.

12. The Autism Program (TAP) • State Crisis: • 3,605,506 children ages 0-18 in Illinois (2000) • As many as 24,000 children in Illinois could be diagnosed with an ASD! • 2004: Illinois General Assembly established TAP to provide: • Training • Consultation • Model Programs in Illinois

13. The Autism Program A best practice approach… • Statewide system operating 5 clinics across the state • TAP promotes partnerships and collaborations working with universities, developmental disability providers, and medical practitioners to identify unmet needs and resources • The Autism Program has developed an infrastructure to train, support and coordinate an informed provider network to assist Illinois Families.

14. Autism Identification Office Based Educational Programs

15. 1 ½ hour presentations • 1.5 hrs. CME credit • Include: • Developmental Screening • Social-Emotional Screening • PPD Screening • Autism Screening

16. 20% of mental health problems identified (Lavigne et al. Pediatr. 1993; 91:649-655) 30% of developmental disabilities identified (Palfrey et al. JPEDS. 1994; 111:651-655) 80-90% with mental health problems identified (Sturner, JDBP 1991; 12:51-64) 70-80% with developmental disabilities correctly identified (Squires et al., JDBP 1996; 17:420-427) Detection RatesWithout Tools With Tools

17. Illinois Unmet Needs Project • 87% reported they provide developmental monitoring (92% of pediatricians) • 64% are not using commercially developed screening tools • 36% do…. • Denver and Denver II (most common) • Ages & Stages Questionnaire • Screen for social-emotional/behavior problems less often Final Report: 2002 Developmental Screening by Primary Care Physicians

18. Illinois Unmet Needs Project Barriers to screening: • Lack of time • Lack of staff • Inadequate reimbursement • Lack of training • Lack of parent acceptance of delay Final Report: 2002 Developmental Screening by Primary Care Physicians

19. Neurodevelopmental disorder with a spectrum of clinical conditions 3 areas of dysfunction: Social interaction/social relatedness difficulty Communication impairment Restrictive/repetitive behaviors and interests What is Autism? Part I - Basic Information

20. Overview of Child Social Development Part II - Normal Social Development

21. What are the earliest signs of Autism? Delays or abnormalities in: • Joint Attention • Social Interaction • Play Behavior

23. Autism Identification Part III - Early Identification

24. Birth through 8 years of age • Two minutes to administer and score if conducted as an interview • Less time is required if parents complete the brief questionnaire in waiting or exam rooms or at home • Written at the fifth-grade reading level • English and Spanish versions

25. Ages & Stages™ Questionnaire • Parent report tool with exercises, 30-35 items • Covers 5 skill/developmental areas • Written at a 6th grade level • Available in Spanish, English, and French • Choices of responses (yes, sometimes, not yet) • Requires 15-20 minutes to complete, 5 minutes to score • 19 color-coded age-appropriate questionnaires and score sheets

26. Autism Screening Tools • CHecklist for Autism in Toddlers (CHAT) • Modified CHecklist for Autism in Toddlers (M-CHAT) • Quick and Quantitative CHecklist for Autism in Toddlers (Q-CHAT)

27. Autism Identification:Behavioral Red Flags • Investigate further and consider autism if the child: • Doesn’t know how to play with toys in a typical fashion • Restricted patterns of interest • “Toe walks” • Has unusual attachments • Lines things up • Presents with sensory symptoms • Has odd movement patterns and/or very repetitive behaviors • Demonstrates echolalia • Throws prolonged or frequent tantrums • Is hyperactive

28. Referrals for children who show signs of autism • DO NOT DELAY • Under 3 years – refer to Early Intervention • 3 years or above – refer to School District • For diagnostic confirmation consider: • Medical Diagnostic through EI • Developmental & behavioral pediatrician • Child psychologist • Pediatric neurologist • Child psychiatrist Part IV - Referrals

29. Encouraging Next Steps • Acknowledge parent’s fear and grief • Provide information on how to tell others • Provide parent with information on the referral sources • Encourage communication • Set a follow-up appointment

30. For More Information • www.edopc.org • info@edopc.org • 888-270-0558 • Sarah Baur, ICAAP Developmental Projects Director • 312/733-1026 x203 • sbaur@illinoisaap.net

31. Thank you…Charles N. Onufer, M.D.800-322-3722cnonufer@uic.edu