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Advancing Autism Care Through Meaningful Research

Stelios Georgiades, Terry Bennett & Team

Lunch & Learn - Offord Centre for Chi ld Studies 18 November 2015

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“The ultimate goal of all research in childhoodpsychiatric disorders is to provide knowledge that will be useful in treating or preventing illness.”

BRADLEY S. PETERSON, 2013

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Plan for today What is Autism? Pathways in ASD study McMaster Autism Research Team Brief video Autism Ontario

“Advancing autism care through meaningful research”

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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

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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

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Community

School

Services

Family

Child

Ecological

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Diagnosis

Preschool

SchoolCommunity

School

Services

Family

Child

Longitudinal

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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

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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)

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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)

Date of download: 2/26/2015Copyright © 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, 2015. doi:10.1001/jamapsychiatry.2014.2463

Developmental Trajectories of Autistic Symptom Severity

Date of download: 2/26/2015Copyright © 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, 2015. doi:10.1001/jamapsychiatry.2014.2463

Developmental Trajectories of Adaptive Functioning

Date of download: 2/26/2015Copyright © 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, 2015. doi:10.1001/jamapsychiatry.2014.2463

Cross-Trajectory Group Membership for Autistic Symptom Severity and Adaptive Functioning

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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”

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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?

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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?

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MacARTMcMaster Autism Research Team

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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 DeanePresident, McMaster University

“This important work will help bridge the gap between autism research and clinical practice.”

Dr. Peter FitzgeraldPresident, McMaster Children's Hospital

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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

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Since June 2014…

Hypothesis: ‘eating pizza’ leads to better ‘brainstorming’

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Interdisciplinary approach

29 autism experts

3 hospitals

11 academic

departments

5research centres

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Integrated knowledge framework

research education

community translatio

n

autism care

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Research interests & expertise

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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

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thanks ! children families

research team

mentors

students

collaborators

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

http://www.raisetheflagforautism.com/video/