Advancing Autism Care Through Meaningful Research Stelios Georgiades, Terry Bennett & Team Lunch & Learn - Offord Centre for Child Studies 18 November

“The ultimate goal of all research in childhood psychiatric disorders is to provide knowledge that will be useful in treating or preventing illness.” BRADLEY S. PETERSON,

Plan for today What is Autism? Pathways in ASD study McMaster Autism Research Team Brief video Autism Ontario “Advancing autism care through meaningful research ” 3

What is Autism? Heterogeneous neurodevelopmental disorder with impairments in social communication and repetitive stereotyped behaviours Prevalence rate 1 in 68 - onset early childhood Presentation changes with development Causes ◦Unknown (mostly...) ◦Genetics believed to play an important role ◦Cannot ignore environmental factors Treatment ◦Mostly behavioural interventions ◦Pharmacological treatment trials underway 4

Pathways in ASD Funded in 2004, largest longitudinal study of ASD Phase I & II completed - 5 Canadian provinces/sites Followed a cohort of 423 newly diagnosed children (age 2-4) to age 11, with 8 data points Describe developmental trajectories of children with ASD Millions $$$, 20 publications (many more coming), 76 students/trainees 5

Community School Services Family Child Ecological 6

Diagnosis Preschool School Community School Services Family Child Longitudinal 7

Selected Findings Variability across Provinces in terms of: ◦Time between first parental concerns and diagnosis ◦Age at formal diagnosis ◦Services received (timing, type, dose, …) …need for a National Autism Strategy 8

Selected Findings ASD diagnostic symptoms overlap with emotional/behavioural ◦Support “clinical specifiers” DSM 5 (Georgiades et al., 2011) Within the autism spectrum there are subgroups of children characterized by different profiles related to: ◦Symptom severity, adaptive functioning skills, emotional/behavioural (Georgiades et a., 2013, 2014) ◦Language impairment, intellectual disability (Bennett et al., 2014) Different developmental interactions between domains (language, social skills) from what would expect in TD kids (Bennett et al., 2015) 9

Selected Findings During the preschool years, there are distinct developmental trajectory groups of children across two domains ◦Autistic symptom severity (12% notable improvement…) ◦Adaptive functioning skills (20% notable improvement…) ◦Only moderate amount of yoking between these two domains (Szatmari et al., 2015) 10

Date of download: 2/26/2015 Copyright © 2015 American Medical Association. All rights reserved. From: Developmental Trajectories of Symptom Severity and Adaptive Functioning in an Inception Cohort of Preschool Children With Autism Spectrum Disorder JAMA Psychiatry. Published online January 28, doi: /jamapsychiatry Developmental Trajectories of Autistic Symptom Severity

Date of download: 2/26/2015 Copyright © 2015 American Medical Association. All rights reserved. From: Developmental Trajectories of Symptom Severity and Adaptive Functioning in an Inception Cohort of Preschool Children With Autism Spectrum Disorder JAMA Psychiatry. Published online January 28, doi: /jamapsychiatry Developmental Trajectories of Adaptive Functioning

Date of download: 2/26/2015 Copyright © 2015 American Medical Association. All rights reserved. From: Developmental Trajectories of Symptom Severity and Adaptive Functioning in an Inception Cohort of Preschool Children With Autism Spectrum Disorder JAMA Psychiatry. Published online January 28, doi: /jamapsychiatry Cross-Trajectory Group Membership for Autistic Symptom Severity and Adaptive Functioning

The Way Forward Phase III recently funded by CIHR for another 7 years Examine the processes that predict variation in Developmental Health (DH) in adolescence DH is defined as “the social, emotional, cognitive, and physical developmental tasks that all children and adolescents must accomplish” DH can be seen as “both a trajectory and a series of achievements or milestones” 14

Phase III – What’s New? Broader scope – developmental health (parents’ input) KTE plan and $$$ Formal training plan ($$$ for 5 post-docs) Economic burden of ASD Study of life transitions ASD Voices study ◦A mixed-methods study ◦Objective is to capture the experiences of youth ◦What are their goals and aspirations? ◦What does a “good outcome” mean to them? 15

Meanwhile ….here at McMaster, we decided to pause and ask ourselves... As our CVs are getting thicker, are we making a difference? At a minimum, are clinicians around us using our findings? Are we (researchers) asking the right questions? Any others we can join forces with? 16

MacART McMaster Autism Research Team 17

In their words “This timely research initiative has the potential to advance our understanding of autism. The work of these McMaster experts has my full support.” Dr. Patrick Deane President, McMaster University “This important work will help bridge the gap between autism research and clinical practice.” Dr. Peter Fitzgerald President, McMaster Children's Hospital 18

In our words Many of us are interested in autism research So far we have been doing well (in silos…) Can we do better if we work together? ◦more interdisciplinary research ◦more meaningful research ◦higher (and quicker) impact 19

Since June 2014… 20 Hypothesis: ‘eating pizza’ leads to better ‘brainstorming’

Interdisciplinary approach 29 autism experts 3 hospitals 11 academic departments 5 research centres 21

Integrated knowledge framework researcheducation community translation autism care 22

Research interests & expertise 23

Strategic priorities Autism Research Stakeholder Symposium ◦15 Jan 2016 – early interventions (Connie Kasari UCLA, MCYS, Autism Ontario) Strategic Autism Research Agenda McMaster Autism Portal Offer learning and training opportunities Develop innovative and meaningful research studies Facilitate the timely translation of research into improved healthcare services for individuals with autism 24

thanks ! children families research team mentors students collaborators 25

Imagine a community that sees the potential in each and every person with ASD 26