ACT's 14th Annual Focus on Research Conference - April 5 & 6, 2018 Epidemiology of ASD Anthony Bailey Institute of Mental Health Chair, UBC Why conduct epidemiological studies • Counting • Disease distribution (age, sex, geographical, time, associated factors) • Severity • Aetiology • Costs and service planning 1
ACT's 14th Annual Focus on Research Conference - April 5 & 6, 2018 Epidemiology • Prevalence: number of individuals with a condition in a population at a particular point in time • Incidence: Number of individuals born with a condition over a particular time period • A case: a person with the defined condition • Geographical boundary • Age range • Time range ASD Epidemiology • Virtually all studies are prevalence studies • Vast majority of studies are of children • Making sense of secular changes requires: • Understanding of changes in diagnostic criteria • Knowledge of epidemiology of other neurodevelopmental disorders 2
ACT's 14th Annual Focus on Research Conference - April 5 & 6, 2018 Pervasive Developmental Disorders •Autism •Atypical autism •Asperger’s syndrome •PDD NOS •Rett syndrome •Disintegrative psychosis DSM ‐ 5:Neurodevelopmental Disorders • Intellectual Disabilities • Communication Disorders • Autism Spectrum Disorder • ADHD • Specific Learning Disorder • Motor Disorders • Other Neurodevelopmental Disorders 3
ACT's 14th Annual Focus on Research Conference - April 5 & 6, 2018 1944: Asperger Autistic psychopathy Assumed genetic Passed from father to son 8 4
ACT's 14th Annual Focus on Research Conference - April 5 & 6, 2018 Adults • Redpath Center, Ontario • 2014 Survey of adults with ASD • 50% of adults were diagnosed after the age of 21 Possible approaches • Record review • Survey data • Administrative data 5
ACT's 14th Annual Focus on Research Conference - April 5 & 6, 2018 THE 2018 NATIONAL AUTISM SPECTRUM DISORDER SURVEILLANCE SYSTEM (NASS) REPORT ‐ ‘MADE IN CANADA’ Ottawa, Ontario March 2018 ACKNOWLEDGEMENTS This work was made possible through collaboration with the Public Health Agency of Canada, participating provincial and territorial governments and expert advice from the Autism Spectrum Disorder – Advisory Committee. 12 6
ACT's 14th Annual Focus on Research Conference - April 5 & 6, 2018 PRESENTATION OVERVIEW National Autism Spectrum Disorder Surveillance System (NASS) 2018 NASS Report Highlights Reporting Products and Activities 13 NASS OBJECTIVES Estimate how many Canadians have ASD ( prevalence ) and how many new cases are emerging ( incidence ) over time Describe the population of Canadians with ASD and compare patterns within Canada and internationally Increase public awareness and understanding of ASD prevalence Inform policy and program decision making 14 7
ACT's 14th Annual Focus on Research Conference - April 5 & 6, 2018 TARGET AUDIENCES FOR THE NASS REPORT Government decision and policy makers and program officials Individuals, families and communities living with ASD Researchers and epidemiologists Non government organizations, professionals and advocates Service providers General public 15 REPORT RELEASE DATE: MARCH 29, 2018 16 8
ACT's 14th Annual Focus on Research Conference - April 5 & 6, 2018 BACKGROUND Highly collaborative multi ‐ source and multi ‐ sector administrative data collection approach Based on 2015 data on children and youth aged 5–17 years Data from 7 provinces and territories (NL, NS, PEI, NB, QC, BC, YK) Data represents 40% of 5–17 year olds across Canada (88% of participating jurisdictions) Reports historical data with rising year ‐ over ‐ year prevalence trends in several jurisdictions Research questions out of scope for the NASS Report (e.g., causality and associated risk factors) Continued monitoring will support better understanding ASD rates and patterns over time 17 *N.B. The previously reported rate for ASD in Canada was 1 in 94 based on the National Epidemiological Database for the Study of Autism in Canada (NEDSAC). Source: Autism Spectrum Disorder among Children and Youth in Canada 2018: A report of the National Autism Spectrum Disorder Surveillance System 18 9
ACT's 14th Annual Focus on Research Conference - April 5 & 6, 2018 ASD PREVALENCE BY SEX, 5 ‐ 17 YEARS, 2015 Source: Autism Spectrum Disorder among Children and Youth in Canada 2018: A report of the National Autism Spectrum Disorder Surveillance System 19 ASD PREVALENCE RATES IN 3 JURISDICTIONS, 5 ‐ 14 YEARS, 2003 ‐ 15 Source: Autism Spectrum Disorder among Children and Youth in Canada 2018: A report of the National Autism Spectrum Disorder Surveillance System 20 10
ACT's 14th Annual Focus on Research Conference - April 5 & 6, 2018 CANADA ‐ UNITED STATES COMPARISON NASS • 2015 data • Monitors 5 ‐ 17 year olds • 1 in 63 among 8 year olds ADDM NETWORK • 2012 data • Monitors 8 year olds only • 1 in 68 among 8 year olds Source: Autism Spectrum Disorder among Children and Youth in Canada 2018: A report of the National Autism Spectrum Disorder Surveillance System 21 ASD PREVALENCE RATES BY PROVINCE AND TERRITORY, 5 ‐ 17 YEARS, 2015 Source: Autism Spectrum Disorder among Children and Youth in Canada 2018: A report of the National Autism Spectrum Disorder Surveillance System 22 11
ACT's 14th Annual Focus on Research Conference - April 5 & 6, 2018 Sex • Sex ratio varied from 1:3 to1:5 across provinces • UBC Adult clinic ~ 1:1 12
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