2. Presented by Carol Andrew FITP Consultant, Ed.D OTR Helen Keith DCF/CDD VT Family Infant Toddler Program Director Kate Rogers VT Department of Education EEE Consultant Gretchen Shuman FITP Autism Specialist, MEd.

3. Brief Overview How common are Autistic Spectrum Disorders in Vermont? How do we identify children and diagnose ASDs? How do we support children (and their families) with ASD What kind of Training and Technical Assistance have we begun to make available? What must happen next….

4. How common is Autism Spectrum Disorders? Source: Centers for Disease Control reports Vermont Interagency White Paper on Autism Spectrum Disorders Report to the ACT 264 Board March 2006 State of Vermont Agency of Human Services & Department of Education Recently the CDC indicates that Autism has an incidence of 1:150 rather than 1:166 as stated in previous years. Due to fact that in the US the average age of diagnosis is 4 years of age, there are a number of children enrolled in FITP and EEE for whom we have concerns and plan services based on their functional abilities. Importance of knowledge about child development is critical, as is screening…

5. Estimates for Vermont Out of 26,800 children under 5 (excluding children under 1) an estimated 157 have a diagnosis of ASD FITP Actives with ASD diagnosis as of June 2007 = 39 (45) The # of children served within this past year –FITP = 51 confirmed diagnosis (includes exits) –plus 10 children identified and awaiting formal evaluation –plus an estimated 20 not likely to have a diagnosis prior to three years of age but are in need of early intensive services EEE Actives with ASD diagnosis as of June 2007 = 79 (-17 SUs) developmental delay category inhibits accurate count best estimate for EEE children with diagnosis currently being served by school districts is 112

6. Parental concerns Average age of diagnosis: 4 years Parental concern from 18 months Sought medical attention: 2 years 90% referred to another professional * 40% given a dx; 25% referred to other professionals – 30% reported “no help given”; 10% reported professional explained problem *25% told “not to worry”

7. Early markers for ASD AAP (risk factors in baby sibs): No babbling by 12 months No pointing or other gestures by 12 months No single words by 16 months No 2 word phrases by 24 months Loss of any language or social skills at any age Other markers: Not responding to their name Following a point Proto declarative pointing – joint attention Lack of imitation

8. Diagnostic Criteria for Autistic Disorder DSM IV 1. Qualitative impairment in social interaction 2. Qualitative impairment in communication 3. Restricted repetitive and stereotyped patterns of behavior, interests and activities 4. Delays or abnormal functioning prior to age 3 years in (a) social interaction (b) language (c) symbolic or imaginative play 5. Not Rett’s or Childhood Disintegrative Disorder

9. In Vermont: MD diagnosis needed Resources tend to be Child Development Clinics at CSHN and Dartmouth Best practice from our (and others) perspective: –timely, multidisciplinary (MD as well as highly trained OT’s SLPs, educators, and psychologists) Outstanding issues: –wait lists (4-6 months) –evaluations without functional recommendations for intervention planning.

10. –Supporting Children and Families –Evaluations in all areas of concern: Communication and social – emotional, coping, adaptive skills etc Gathering more information on all aspects of functioning including observations, reports etc across settings –Building an IFSP-IEP team, outcomes, strategies, services (including intensity), and any specialized accommodations – in home, school, child care and community settings…. –Consideration of one on one assistance/PCA –Role of families and service providers –Consultation, training and supervision

11. Think outside the box CHILD

12. There Are Many Variables to Explore Interactions Health Play Learning Environment Instruction Home & Family Outings/Events Friends Toys, Level of play, Opportunities, Choice, Expectations… Transitions, Cues, Prompts, Supports, Accommodations… Schedules, Room arrangement, Materials, Adaptations, Resources, Predictability… Routines, Resources, Siblings, Environment, Respite, Predictability, Extended family… Places family goes, Activities… Shared interests & experiences, Relationships… Trauma, Illness, Stamina, Medication… Communication to the child, Emotional support, Attachment…

13. Intervention Options National Academy of Sciences 2001 Recommendations* Early intervention: 1.5-5 years of age 25 hours of direct intervention That is engaging Individualized (1:1 or 1:2) And has a strategic direction Goal: Personal independence and social responsibility

14. Approaches to intervention Specific therapies and educational strategies DAP and interactions matched to child’s functional developmental levels and individual differences Formation of ongoing, nurturing trusting, relationships with consistent caregivers Protective, stable, secure relationships

15. Intervention Options cont. Behavioral Applied Behavior Analysis (Lovaas, Discrete Trial)* Developmental, Individualized difference, Relationship-based (DIR) Other social pragmatic approaches (RDI) Medication and alternative approaches

16. N N “How do we support children with ASD? And, is there a magic ‘easy’ button !?”

17. Training and Technical Assistance (TTA) VAEYC, individualized TTA based on regional FITP & SU requests Workshops and in-services TTA goal is to train across disciplines AHS-DOE resources: Act 264 and “White Paper” follow up community trainings Autism 101’s; “Next Steps” Autism task force materials, resources – family support and web site Statewide availability of consultation and training: Carol, Gretchen, Claire and Clare

18. What’s next?? Need to focus more on: –qualified personnel in training, supervision, 1-1 aides; SLP’s. OTs and MD’s and social workers –Training in infancy, very early child development and parenting issues –Writing functional goals and using daily routines –Ongoing evaluation of the effectiveness of services –More accurate data collection systems –Birth to five teams for children with ASD (and families) and providers. Other

19. Web resources