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

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

Prevalence of ASD American CDC: 4.5 – 9.9/ yr olds (2000) Manitoba and PEI: / yr olds (2002) Montreal School Board: 6.7/ yr olds (2003)

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

Report of the Senate Standing Committee on Social Affairs, Science and Technology, 2007 Pay 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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Video Clips

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

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

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

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

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

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