Importance
Parents are desperate to know their child’s prognosis and what they can do to maximize chances of a good outcome
There have been assumptions made that contextual factors do not influence the development of ASD children and these may be incorrect when considering trajectories of behavioural adjustment and family well-being
It is possible to identify contextual factors that are potentially modifiable (e.g., parent-child interactions, processes of care, etc.) that could have a major impact on what services are required and on how service delivery should be accomplished.
Our Methods and Findings
The primary outcomes were child centred, so we looked at their social competence, communication, behavior adjustment, and adaptive functioning. The secondary outcome was family well-being, so the investigators looked at child, family, school, intervention, service, and community factors.
Assessments
The investigators chose the following measures and scales for use in each of the study periods.
Phase I
CHILD PREDICTORS
Diagnosis
- Autism Diagnostic Interview-Revised (ADI-R) (Rutter et al., 2003)
Developmental Level
- Merrill-Palmer-R Scales of Development (Roid & Sampers, 2004)
- Wechsler Preschool and Primary Scale of Intelligence – Third Edition: Canadian (WPPSI-III; Wecshler, 2002)
Nonverbal Social Communication
- Early Social Communication Scales (ESCS; Mundy et al. 1996)
Imitation
- Multi-dimensional Imitation Assessment (MIA; Lowe-Pearce & Smith, 2004)
Language
- MacArthur Communication Development Inventories (CDI; Fenson et al., 1993)
- Preschool Language Scale - 4th edition. (PLS-4; Zimmerman, Steiner & Pond, 2002)
- Peabody Picture Vocabulary Test - 3rd edition (PPVT-III - Form A; Dunn & Dunn, 1997)
- Clinical Evaluation of Language Fundamentals - 4th edition (CELF-4; Semel et al., 2003)
Physical Health, Sleep, Feeding, & Repetitive Behaviours
- Child's Sleep Habits Questionnaire - Modified (CSHQ-Modified; Owens et al., 1998)
- Behavioural Pediatrics Feeding Assessment (BPFA; Crist & Napier-Phillips, 2001)
- General Health Questionnaire (GHQ; OCHS-2, 2000)
- Repetitive Behaviour Scale - Revised (RBS-R; Bodfish et al., 1999)
Community / School Services
- Pathways Autism Services Log (Pathways, 2005)
CHILD OUTCOMES
Social Competence
- Vineland Adaptive Behavior Scale - 2nd edition (VABS - 2; Sparrow, Cicchetti & Balla, 2005) - Parent
- Social Support Survey - National Longitudinal Survey of Children and Youth - Cycle 6 edition (NLSCY; 2004)
- Autism Diagnostic Observation Schedule (ADOS; Lord, et al. 2002)
- Social Responsiveness Scale (SRS; Constantino et al., 2005)
Behaviour Adjustment
- Vineland Adaptive Behavior Scale - 2nd edition (VABS - 2; Sparrow, Cicchetti & Balla, 2005) - Parent
- Aberrant Behavior Checklist (ABC; Aman et al., 1985)
- Child Behavior Checklist 1.5 to 5-year old version (CBCL; Achenbach, 2000) - without the Language Development Survey
Adaptive Functioning
- Vineland Adaptive Behavior Scale - 2nd edition (VABS - 2; Sparrow, Cicchetti & Balla, 2005) - Parent
Communication
- Vineland Adaptive Behavior Scale - 2nd edition (VABS - 2; Sparrow, Cicchetti & Balla, 2005) - Parent
- Autism Diagnostic Observation Schedule (ADOS; Lord, et al. 2002)
- Children’s Communication Checklist - 2nd edition (CCC-2; Bishop, 2006)
FAMILY PREDICTORS
- Family Background Information Questionnaire (FBIQ; OCHS-2, 2000)
- Ways of Coping Questionnaire (WAYS; Folkman et al., 1980)
- Social Support Survey - National Longitudinal Survey of Children and Youth - Cycle 6 edition (NLSCY; 2004)
- Children in Family Questionnaire (CFQ; Pathways, 2005)
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)
Findings
Our published findings and our analyses supported a major shift in the way we understood and measured ASD symptoms in childhood. Instead of specific symptoms that present early and stay relatively unchanged over time, we found that ASD might be better understood as a complex, dynamic disorder, that can vary in individuals over time, and can also differ among groups of individuals. This highlights the importance of developing ASD interventions that are delivered as early as possible, and that are diverse, flexible, and sensitive enough to meet the needs of children with ASD who follow different developmental pathways.
Validating the Repetitive Behavior Scale-Revised in young children with autism spectrum disorder. (2010) Mirenda P, Smith IM, Vaillancourt T, Georgiades S, Duku E, Szatmari P, Bryson S, Fombonne E, Roberts W, Volden J, Waddell C, Zwaigenbaum L; Pathways in ASD Study Team. Journal of Autism and Developmental Disorders.
Using the Preschool Language Scale-IV to characterize language in preschoolers with ASD. (2011) Volden J, Smith IM, Szatmari P, Bryson S, Fombonne E, Mirenda P, Roberts W, Vaillancourt T, Waddell C, Zwaigenbaum L, Georgiades S, Duku E, Thompson A. American Journal of Speech-Language Pathology.
Phenotypic overlap between core diagnostic features and emotional/behavioral problems in preschool children with autism spectrum disorder. (2011) Georgiades S, Szatmari P, Duku E, Zwaigenbaum L, Bryson S, Roberts W, Fombonne E, Mirenda P, Smith I, Vaillancourt T, Volden J, Waddell C, Thompson A; Pathways in ASD Study Team (2011). Journal of Autism and Developmental Disorders.
Factor analysis of the Parenting Stress Index-Short Form with parents of young children with autism spectrum disorders. (2011) Zaidman-Zait A, Mirenda P, Zumbo BD, Georgiades S, Szatmari P, Bryson S, Fombonne E, Roberts W, Smith I, Vaillancourt T, Volden J, Waddell C, Zwaigenbaum L, Duku E, Thompson A; Pathways in ASD Study Team. Autism Research.
Investigating phenotypic heterogeneity in children with autism spectrum disorder: a factor mixture modeling approach. (2013) Georgiades S, Szatmari P, Boyle M, Hanna S, Duku E, Zwaigenbaum L, Bryson S, Fombonne E, Volden J, Mirenda P, Smith I, Roberts W, Vaillancourt T, Waddell C, Bennett T, Thompson A; Pathways in ASD Study Team. Journal of Child Psychology and Psychiatry.
Investigating the measurement properties of the Social Responsiveness Scale in preschool children with Autism Spectrum Disorders.(2012) Duku E, Vaillancourt T, Szatmari P, Georgiades S, Zwaigenbaum L, Smith IM, Bryson S, Fombonne E, Mirenda P, Roberts W, Volden J, Waddell C, Thompson A, Bennett T; Pathways in ASD Study Team. Journal of Autism and Developmental Disorders.
Modeling the Phenotypic Architecture of Autism Symptoms from Time of Diagnosis to Age 6. (2014) Georgiades S, Boyle M, Szatmari P, Hanna S, Duku E, Zwaigenbaum L, Bryson S, Fombonne E, Volden J, Mirenda P, Smith I, Roberts W, Vaillancourt T, Waddell C, Bennett T, Elsabbagh M, Thompson A, Pathways in ASD Study Team. Journal of Autism and Developmental Disorders.
Behavioural pediatrics feeding assessment scale in young children with autism spectrum disorder: psychometrics and associations with child and parent variables. (2015) Allen SL, Smith IM, Duku E, Vaillancourt T, Szatmari P, Bryson S, Fombonne E, Volden J, Waddell C, Zwaigenbaum L, Roberts W, Mirenda P, Bennett T, Elsabbagh M, Georgiades S. Journal of Pediatric Psychology.
Brief Report: Characteristics of preschool children with ASD vary by ascertainment. (2017) Sacrey LR, Zwaigenbaum L, Szatmari P, Bryson S, Georgiades S, Brian J, Smith IM, Vaillancourt T, Garon N, Roncadin C, Elsabbagh M. Journal of Autism and Developmental Disorders.
A Qualitative Study of Autism Policy in Canada: Seeking Consensus on Children’s Services. (2015) Shepherd C & Waddell C. Journal of Autism and Developmental Disorders.
Chapter 5 - Resilience and Developmental Health in Autism Spectrum Disorder. (2016) Szatmari P, Zwaigenbaum L, Georgiades S, Elsabbagh M, Waddell C, Bennett T, Bryson S, Duku E, Fombonne E, Mirenda P, Roberts W, Smith I, Vaillancourt T, Volden J. IACAPAP 2016 Program
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.