Edmonton Autism Research Centre

The following information is from the Pathways in Autism Spectrum Disorder website. Please visit here for more information.

The Pathways in ASD study is one of the world’s largest, and longest-running longitudinal studies of the development of young children and adolescents with ASD.

And it all began with some play money….

In 2003, the Canadian Autism Intervention Research Network (CAIRN) held a conference in Toronto, the main purpose of which was to create a national ASD research agenda. Participants – practitioners, policy makers, parents, researchers, and clinicians -- gathered in Toronto to hear presentations from the researchers.

Small groups formed, each provided with a sum of play money. Their task was to decide which research ideas they would fund with this finite amount of money. A national longitudinal study of ASD garnered the largest “cash investment.”

Funding from the Canadian Institutes of Health Research (CIHR), and other partners, the researchers launched the study in 2005, at five regional centres across Canada: Halifax, Nova Scotia, Montreal, Quebec, Hamilton, Ontario, Edmonton, Alberta, and Vancouver, British Columbia. Over several months, 424 children were recruited around the time of their diagnosis at these sites.

Pathways Study Site Locations

The initial study, now termed Phase I, began in 2005 and sought to describe developmental trajectories of children with ASD between the time of their diagnosis at age 2-4 years and their transition into school. The investigators looked at how child, family, treatment, and community factors affected the development of the children. The Pathways study also looked at ASD policy making in Canada, to find ways of improving the interactions between researchers, policy makers, and parents.

Questions:

Are there distinct developmental trajectories for social competence, communication, behaviour adjustment, and adaptive functioning? How are families doing during this time?

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.

Methods & Assessments

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.

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 & Outcomes

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.

A selection of these findings are available at the bottom of this page.

In Phase II of the study, the goals were to continue to monitor the developmental trajectories of children with ASD in middle childhood (ages 7 to 11) and to better understand how family experiences impact abilities and skills as the child develop. The main factors of interest included academic progress, behavioural adaptation, adaptive functioning skills, mental health issues, community and school services received, and parental stress and family functioning.

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?

Importance

Phase II provided an opportunity to better understand why school entry is such an important turning point for so many children with ASD, and why things start to deteriorate for some families but not others.

Methods & Assessments

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.

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.

In 2015, with further funding from the Canadian Institute of Health Research (CIHR), most of the children and their families are again taking part in the study, for 7 more years.
This time, the investigators are looking at "developmental health" – that is, how well the children/teens are growing in personal competence and daily living skills, and what helps them move toward independence, whether in the work world, post-secondary education, or in their living arrangements. In addition, in this next phase of research, the investigators have added a sub-project that captures the "voices" of autistic individuals, as well as a major training and mentoring program designed to push ASD research and practice forward.

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?

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.

Methods & Assessments

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.

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/School/Service Predictors

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)

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.

Pathways in ASD Results

2016 - Depression, Anxiety, and Problem Behaviours in Young Children with ASD

This Research Report was written by T. Vaillancourt and colleagues and was published in Development and Psychopathology.

2016 - Effects of Personal and Social Resources on Parenting Stress in Mothers of Children with ASD

This Research Report was written by A. Zaidman-Zait and colleagues and was published in Autism.

2016 - Service Utilization in a Sample of Canadian Preschool Children with ASD

This Research Report was written by J. Volden and colleagues and was published in Pediatrics and Child Health.

2015 - Social and Language Development in Preschoolers with Autism Spectrum Disorders

This Research Report was written by T. Bennett and colleagues and was published in Journal of Child Psychology and Psychiatry.

2015 - Stability and Change in Thinking and Daily Living Skills in Preschoolers with ASD

This Research Report was written by H. Flanagan and colleagues and was published in Journal of Autism and Developmental Disorders.

2015 - Developmental Pathways of Preschool Children with ASD

This Research Report was written by P. Szatmari and colleagues and was published in Journal of the American Medical Association.

2015 - Autism Policy in Canada

This Research Report was written by C. Shepherd and C. Waddell and was published in Journal of Autism and Developmental Disorders.

2014 - Parent Stress and Child Behaviour Problems

This Research Report was written by C. Shepherd and C. Waddell and was published in Journal of Autism and Developmental Disorders.

2014 - Language Impairment and Early Social Skills in Different Groups of Children with ASD

This Research Report was written by T. Bennett and colleagues and was published in Journal of Autism and Developmental Disorders.

2012 - Effects of Language Environments on Children with ASD

This Research Report was written by J.K. Ohashi and colleagues and was published in Journal of Autism and Developmental Disorders.

For more information or for PDF prints of any of these papers, please email olivia.conlon@ahs.ca

Report abuse