Our Plans & Procedures
Themes
Phase II: Family-centred care
The study is fueled by the desire to research care with families in mind.
Phase II: Measure and define developmental health and identify optimal outcomes that are important to parents, (socialization, functional independence, self-determination, achievement, and behavioural regulation), i.e, puberty, bullying, school achievement independence.
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, such as from 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
Are there distinct developmental trajectories related to transition to school, family well-being, and trajectories for social competence, communication, and internalizing (e.g., depression and anxiety) and externalizing behaviours (aggression)? Will symptoms vary over time and alter the diagnosis?
Our Methods and Findings
The primary outcomes were ASD behaviours/symptoms, social competence, communication, mental health/well-being, school achievement and adaptation, and family well-being.
The variables examined were child-centred, so they focused on family, school, services, and community.
Assessments
CHILD PREDICTORS
Language / Communication
- Preschool Language Scale - 4th edition. (PLS-4; Zimmerman, Steiner & Pond, 2002)
- Comprehensive Assessment of Spoken Language (CASL; Carrow-Woolfolk, 1999)
- Clinical Evaluation of Language Fundamentals (CELF-4; Semel et al., 2003)
Cognitive Ability / IQ / Developmental Level
- Wechsler Intelligence Scale for Children - 4th edition (WISC-IV; Wechsler, 2003)
- Merril-Palmer-Revised Scales of Development (M-P-R; Roid & Sampers, 2004)
Temperament
- Temperament in Middle Childhoold Questionnaire (TMCQ; Simonds et al., 2004)
Physical Health
- General Health Questionnaire - Short Form (GHQ-SF; OCHS-2, 2000)
FAMILY / SCHOOL / COMMUNITY PREDICTORS
- Family Background Information Questionnaire (FBIQ; OCHS-2, 2000)
- Children in Family Questionnaire (CFQ; Pathways, 2005)
- Ways of Coping Questionnaire (WAYS; Folkman et al., 1980)
- Social Support Survey - National Longitudinal Survey of Children and Youth - Cycle 6 edition (NLSCY; 2004)
- Family Inventory of Life Events and Changes - Modified (FILE; McCubbin et al., 1996)
- Measure of Processes of Care (MPOC; King et al., 1995)
- Bullying Questionnaire (Bullying; Vaillancourt et al., 2008)
- School as a Caring Community Profile II Survey (SCCP-II; Lickona et al., 2003)
- Community Services Interview (Pathways, 2008)
- School Services Interview (Pathways, 2008)
CHILD OUTCOMES
Social Competence
- Vineland Adaptive Behavior Scale - 2nd edition (VABS - 2; Sparrow, Cicchetti & Balla, 2005) - Parent & Teacher
- Social Responsiveness Scale (SRS; Constantino, et al., 2005)
- Social Support Survey - National Longitudinal Survey of Children and Youth - Cycle 6 edition (NLSCY; 2004)
Communication
- Vineland Adaptive Behavior Scale - 2nd edition (VABS - 2; Sparrow, Cicchetti & Balla, 2005) - Parent & Teacher
- Children’s Communication Checklist - 2nd edition (CCC-2; Bishop, 1998)
- Expression, Reception and Recall of Narrative Instrument (ERRNI; Bishop, 2008)
Mental Health / Well-being
- Aberrant Behavior Checklist (ABC; Aman et al., 1985)
- Child Behavior Checklist 6-18 year old version (CBCL 6-18; Achenbach, 2000)
- Spence Children's Anxiety Scale - Parent Report (SPENCE; Nauta et al., 2004)
ASD Behaviours / Symptoms
- Autism Diagnostic Interview-Revised (ADI-R) (Rutter et al., 2003)
- Autism Diagnostic Observation Schedule (ADOS; Lord, et al. 2002)
- Repetitive Behaviour Scale - Revised (RBS-R; Bodfish et al., 1999)
School Achievement
- Wechsler Individual Achievement Test - 2nd edition - Abbreviated - Canadian (WIAT-II-A, CDN; Psychological Corporation, 2001)
School Adaptation
- Behavior Rating Inventory of Executive Function (BRIEF; Gioia et al., 2000)
- Vineland Adaptive Behavior Scale - 2nd edition (VABS - 2; Sparrow, Cicchetti & Balla, 2005) - Teacher
- Report Cards
FAMILY OUTCOMES
- Symptom Checklist-90-Revised (SCL-90-R; Derogatis, 1994)
- Family Relationships Questionnaire (FRQ; OCHS-2; 2000)
- Parenting Stress Index - Short Form (PSI/SF; Abidin, 1995)
- Sibling Relationships Questionnaire (SRQ; Buhrmester & Furman, 1990)
Findings
This study’s results could lead to an important conceptual shift, that is, rather than thinking about variability in ASD as simply being intrinsic to the child, who then interacts with the outside world, we have gathered evidence to show whether, or not, just like typical children development and growth in children with ASD reflects child, family and contextual factors which are strongly linked, and together determine the course of developmental trajectories through childhood and beyond.
Beyond Sentences: Profiling language and communication in school-aged children with Autism Spectrum Disorder. (2017) Volden J, Dodd E, Engel K, Smith IM, Szatmari P, Fombonne E, Zwaigenbaum L, Mirenda P, Bryson S, Roberts W, Vaillancourt T, Waddell C, Elsabbagh M, Bennett T, Georgiades S, Duku E; Pathways in ASD study team. Journal of Speech, Language and Hearing Research.
Psychometric Properties of the Spence Children's Anxiety Scale: Parent Report in Children with Autism Spectrum Disorder.Jitlina K, Zumbo B, Mirenda P, Ford L, Bennett T, Georgiades S, Waddell C, Smith IM, Volden J, Duku E, Zwaigenbaum L, Szatmari P, Vaillancourt T, Elsabbagh M.J Autism Dev Disord. 2017 Apr 13. doi: 10.1007/s10803-017-3110-8. PMID: 28409361.
Profiles of Social and Coping Resources in Families of Children with Autism Spectrum Disorder: Relations to Parent and Child Outcomes. (2018) Zaidman-Zait A, Mirenda P, Szatmari P, Duku E, Smith IM, Vaillancourt T, Volden J, Waddell C, Bennett T, Zwaigenbaum L, Elsabaggh M, Georgiades S; Pathways in ASD Study Team. Journal of Autism and Developmental Disorders.
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.