Phase III

Our Plans & Procedures

Themes

All Phases: Transition Periods & Critical Times of Development

Data from various transition periods (i.e. pre-school to school age, adolescence to adulthood) and critical times of development (i.e. initial diagnosis to school entrance, middle childhood) are being collected

A better understanding of developmental trajectories during these times may enable us to better inform practice and policy in the future

Questions

Using the concept of Developmental Health (socialization, functional independence, self-determination, achievement, and behavioural regulation), to what extent do factors such as the child, family, services, school, and availability and access to community resources influence associated developmental trajectories?

+ SD intervention, ICER of intervention services, and ASD voices

Importance

It is crucial to learn about developmental health trajectories in youth with ASD, and explore if key child and contextual factors may alter them.

Gaining an understanding of the economic burden of ASD during adolescence to both families and the service system is imperative.

Our Methods and Findings

In this new phase of the study, the investigators are examining the developmental health domains of socialization, functional independence, self-determination, achievement, and behavioural regulation.

Assessments

CHILD PREDICTORS

Cognitive Ability / IQ

Wechsler Abbreviated Scale of Intelligence - 2nd edition (WASI-II; Wechsler, 2011)
Leiter International Performance Scale, Revised edition (LEITER-R; Roid et al.,1997) OR
Leiter International Performance Scale, Third edition (LEITER-3; Roid et al., 2013)

ASD Symptoms

Autism Diagnostic Interview Revised (ADI-R; Lord et al., 1994)
Autism Diagnostic Observation Schedule-2 (ADOS-2; Lord et al., 2012)

Language & Communication

Comprehensive Assessment of Spoken Language (CASL; Carrow-Woolfolk, 1999)
Clinical Evaluation of Language Fundamentals (CELF-4; Semel et al., 2003)
Children’s Communication Checklist – 2nd Edition (CCC-2; Bishop, 1998)

Physical Health

General Health Questionnaire - Short Form (GHQ-SF; OCHS-2, 2000)

Executive Function

Delis-Kaplan Executive Function System (D-KEFS; Delis, Kaplan, & Kramer, 2001)
Behavior Rating Inventory of Executive Function (BRIEF; Gioia et al., 2000)

FAMILY PREDICTORS

Family Background Information Questionnaire (FBIQ; OCHS-2, 2000)
Children in Family Questionnaire (CFQ; Pathways, 2005)
Family Inventory of Life Events and Changes - Modified (FILE; McCubbin et al., 1996)
Social Support Survey - National Longitudinal Survey of Children and Youth - Cycle 6 edition (NLSCY; 2004)
Ways of Coping Questionnaire (WAYS; Folkman et al., 1980)
Symptom Checklist-90-Revised (SCL-90-R; Derogatis, 1994)
Parent Stress Measure (PSS; Bonds et al., 2002; Cohen et al., 1983; Pearlin & Schooler, 1978)

SCHOOL PREDICTORS

Measure of Processes of Care (MPOC; King et al., 1995)

SERVICES PREDICTORS

Resource Use Questionnaire - Adolescent (RUQ-A; Ungar & Pathways, 2016)

CHILD OUTCOMES

Socialization

Vineland Adaptive Behavior Scale - 2nd edition (VABS - 2; Sparrow, Cicchetti & Balla, 2005) - Parent
Bullying Questionnaire (Bullying; Vaillancourt et al., 2008)
Loneliness Rating Scale (LRS; Asher, Hymel & Renshaw, 1984)
Social Responsiveness Scale (SRS; Constantino et al., 2005)

Functional Independence

Vineland Adaptive Behavior Scale - 2nd edition (VABS - 2; Sparrow, Cicchetti & Balla, 2005) - Parent
Participation and Involvement Measure for Children & Youth (PEM-CY; CanChild, 2010)

Self-Determination

AIR Self-Determination Scale (AIR; American Institutes for Research, 1994)

Achievement

Wechsler Individual Achievement Test - 2nd edition (WIAT-II; Psychological Corporation, 2001)

Behavioural Regulation

Child Behavior Checklist 6-18 year old version (CBCL 6-18; Achenbach, 2000)
Child & Adolescent Symptom Inventory-5 (CASI-5; Gadow & Sprafkin, 2016)

FAMILY OUTCOMES

Family Relationships Questionnaire (FRQ; OCHS-2; 2000)
Sibling Relationships Questionnaire (SRQ; Buhrmester & Furman, 1990)

Findings

Data collection started in January 2017. The Pathways groups across Canada are happy to report that a majority of families have continued to participate in Phase III. We will provide updates on our findings as soon as we can.

Our Next Steps

We will engage in continued analysis of Phase II data
We will begin collection and analysis of Phase III data
We will strive to continue data collection into adulthood (possible Phase IV) by emphasizing the usefulness of data that can be collected from adult population.
We will argue for funding by 1) citing the belief that the continued existence of inception cohort provides a unique opportunity to collect and analyse data over the entire lifespan of these individuals; 2) it is likely these data are not seen in any other studies conducted, and 3) that it is an invaluable opportunity to track full developmental trajectories.

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