Enhancing Local Diagnostic Capacity: The Autism Initiative

1. Enhancing Local Diagnostic Capacity: The Autism Initiative Nicky Jones-Stokreef, MD, FRCPC CTN and Orillia Soldier’s Memorial Hospital Amber Bartlett, M.Sc., S-LP Simcoe County Preschool Speech and Language Services SYMPOSIUM 2008

2. Outline • Justification for new model • Description of Simcoe County model • ADOS: description and video clips • Physician and Parent Feedback • Outcomes • Next steps • Take Home Message

3. Prevalence of ASD • American CDC: 4.5 – 9.9/1000 8 yr olds (2000) • Manitoba and PEI: 3.8-4.1/1000 5-9 yr olds (2002) • Montreal School Board: 6.7/1000 8 yr olds (2003)

4. Population of children 0-9 2006 Census: Simcoe County 11.3 % of population (422,204) Barrie: 17,200 Orillia: 3,080 2862 is the number of children 0-9 years predicted to have ASD in Simcoe County

5. Report of the Senate Standing Committee on Social Affairs, Science and Technology, 2007Pay Now or Pay Later: The Final Report on the Enquiry on the Funding for the Treatment of Autism_______________________________ • Significant wait times for diagnosis a problem • Shortage of well trained professionals contributes to wait times

6. National Autism Strategy • Motion M-172 adopted by parliament Dec 5, 2006 • ASD is a critical issue • Develop a national strategy

8. Diagnosis of ASD • Early ID is crucial to the success of early intervention • Children can be identified with signs of ASD by the time that they are 18 to 36 months of age

9. Simcoe County Preschool ASD Diagnosis Initiative Children’s Treatment Network Paediatricians of Simcoe County Simcoe County Preschool Speech and Language Program

10. Description of Model • Refer for diagnostic assessment • Components of Diagnosis • Community S-LP Assessment • ADOS assessment by trained S-LPs • General paediatric consultation • Developmental paediatric back up

11. Description of Model • Innovative • Collaborative • Use of local resources • Enhancing partnerships • Ongoing education • Multiple access points

12. Partnerships Our partnerships have included: • Primary care physicians • Paediatricians • Early Intervention services • Psychology • Behavioral Services • Autism Ontario • Red Flags awareness campaign • Next Steps document

13. Red Flags • Diminished, atypical, or no babbling or gesturing by 12 months • Lack of response to name by 12 months • No single words by 16 months • Diminished atypical or no 2 word spont phrases by 24 months • Loss of language or social skill at any age • Lack of joint attention • www.autismspeaks.org/video/glossary.php

14. Role of Community S-LP • Prioritize • Language assessment • Eligibility for ADOS • Participate in further assessment and follow up

15. Role of Community Team Members • Invited to attend ADOS • Attend the paediatrician appointment • Follow up and intervention

16. Role of ADOS Trained S-LPs • Coordination of Assessment process • Administering and scoring ADOS • Reporting to general paediatrician • Linking with community S-LP

17. Role of Developmental Paediatrician • Ongoing education of S-LPs and paediatricians • Reviews ADOS tapes to ensure reliability of results • Provides further consultation in ambiguous cases

18. Role of General Paediatrician • Developmental history • Physical examination • Integrates ADOS results with their clinical opinion/assessment and information from other community team members • Provides a diagnosis if appropriate • Investigations and next steps • Follow up

19. Standardized Assessment: ADOS • In our model Modules 1 and 2 are being administered by the 5 validating S-LPs • The ADOS is a standardized tool which entails: • Setting a social scene that is minimally supported • Social presses • Communicative temptations • Observing social initiations, play and atypical behaviours

20. Standardized Assessment: ADOS • Highly specific and sensitive • Correctly identifies 95% of those with Autism • Correctly identifies 92% not in the Autism Spectrum • Maps onto DSM IV TR criteria

21. Video Clips

22. Feedback from paediatricians • Most feel comfortable with preschool ASD diagnosis, most of the time • Know where to refer if unsure • Use community information

23. Feedback from parents • Most referred for diagnosis by EI Services (7/11) • All families waited 4 months or less • Majority satisfied with S-LP • All families seen by paediatrician within 5 weeks of ADOS

24. Feedback from parents • Paediatrician follow up appointment • All felt appointment was thorough • Most felt the diagnosis was clear • Most were provided with adequate info on where to go/what to next • All were all offered second appointments • All received a letter or report of diagnosis

25. Outcome • 42 children seen for ADOS since Sept 07 • Most are diagnosed with ASD • All are hooked up with appropriate EI services and paediatrician • Inconsistencies remain in process and investigations • 3 families required referral to developmental paediatrician

26. Next Steps • Further feedback from families • Statistics • Practice Guideline • Educational seminar for general paediatricians • Link with psychology assessment • How to further increase capacity: increasing demand continues

27. Take Home Message • Enhancing Diagnostic Capacity • Build on available local resources • Improve collaboration and communication • Targeted education • Evidence based practice • Quality control • If you have concerns regarding Red Flags for ASD please talk to your team members and refer for an S-LP assessment