Faculty of Health

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Open Access
A Review of Emergency Visits made by Youth and Adults with Autism Spectrum Disorder from the Parent Perspective
(Emerald Publishing, 2018) Lunsky, Yona; Tint, Ami; Weiss, Jonathan; Palucka, Anna; Bradley, Elspeth
Purpose: Past research has shown individuals with autism spectrum disorder (ASD) visit hospital emergency departments (ED) at high rates. In order to assist individuals with ASD, their families and health care providers to improve ED care, it is important to understand these encounters in greater detail. This study aimed to provide a descriptive summary of the ED experiences of adolescents and adults with ASD, from the perspective of their families. Design/Methodology/Approach: A subset of data from a larger prospective cohort study was used. Specifically, 46 parents of adolescents and adults with ASD provided details concerning 49 ED visits over a 12-month period. Findings: Results suggest a range of presentations requiring ED use, and also diverse profiles of those with ASD who visited the ED, in terms of age, gender, and ASD severity. While overall degree of satisfaction with care received in the ED was high, parents provided recommendations to improve the ED experiences for their family members with ASD. Originality/value: This is the first study to provide detailed accounts of ED visits from the perspective of parents of adolescents and adults with ASD. Families play an important role in the lives of individuals with ASD across the lifespan and it is important to include their perspective to improve hospital- based care for those with ASD.
Open Access
A Systematic Literature Review of Emotion Regulation Measurement in Individuals With Autism Spectrum Disorder
(International Society for Autism Research, Wiley Periodicals, Inc., 2014-12) Weiss, Jonathan; Thomson, Kendra; Chan, Lisa
Emotion regulation (ER) difficulties are a potential common factor underlying the presentation of multiple emotional and behavioral problems in individuals with Autism Spectrum Disorder (ASD). To provide an overview of how ER has been studied in individuals with ASD, we conducted a systematic review of the past 20 years of ER research in the ASD population, using established keywords from the most comprehensive ER literature review of the typically developing population to date. Out of an initial sampling of 305 studies, 32 were eligible for review. We examined the types of methods (self-report, informant report, naturalistic observation/ behavior coding, physiological, and open-ended) and the ER constructs based on Gross and Thompson’s modal model (situation selection, situation modification, attention deployment, cognitive change, and response modulation). Studies most often assessed ER using one type of method and from a unidimensional perspective. Across the 32 studies, we documented the types of measures used and found that 38% of studies used self-report, 44% included an informant report measure, 31% included at least one naturalistic observation/behavior coding measure, 13% included at least one physiological measure, and 13% included at least one open-ended measure. Only 25% of studies used more than one method of measurement. The findings of the current review provide the field with an in-depth analysis of various ER measures and how each measure taps into an ER framework. Future research can use this model to examine ER in a multicomponent way and through multiple methods.
Open Access
Access barriers to services by immigrant mothers of children with autism in Canada
(17/01/2017) Khanlou, Nazilla; Haque, Nasim; Mustafa, Nida; Vazquez, Luz Maria; Mantini, Anne; Weiss, Jonathan
Equal access for autism services remains suboptimal for diverse groups. In Canada,little is known about the barriers immigrant mothers face accessing services and support for their children with developmental disabilities. In this qualitative study, 21 immigrant mothers of children with Autism, from a diverse ethno cultural background, were interviewed inToronto, Canada. We apply House’s (1981) four domains of social support to analyze findings.Structural support challenges, such as delays in diagnosis, fragmented and dispersed services were common, followed by instrumental challenges due to loss of social ties and stigma. Lack of expected support from partners, and negative perceptions of services, were identified as emotional and perceptive challenges. Focused attention is required to address inequalities within the context of current access pathways for autism.
Open Access
Brief Report of Preliminary Outcomes of an Emotion Regulation Intervention for Children with Autism Spectrum Disorder
(Springer International Publishing AG, 16/04/2015) Thomson, Kendra; Burnham Riosa, Priscilla; Weiss, Jonathan
Children with autism spectrum disorder (ASD) often present with comorbid psychopathology including problems with emotion regulation. The goal of the present research was to investigate the feasibility of a multicomponent manualized cognitive behavior therapy treatment program for improving emotion regulation in youth with ASD 8 to 12 years of age. Thirteen males and their parents participated in the intervention, reporting high satisfaction with the activities and program overall, and attending all sessions. Preliminary outcomes regarding emotion regulation and psychopathology, and feasibility of the intervention, are summarized and discussed.
Open Access
Brief Report: Stress in parents of adults with intellectual disabilities attending Special Olympics competitions
(Wiley, 2005) Weiss, Jonathan; Diamond, Terry
Parents of individuals with intellectual disabilities often experience higher levels of child-related stress than parents of individuals without an intellectual disability. The present study examines differences in the degree of maternal and paternal stress found in parents who watch their adult children at Special Olympics competition events compared to parents who watch less frequently. Fifty-seven mothers and 39 fathers completed the Parenting Stress Index (3rd Ed; Abidin, 1995) in reference to their children with intellectual disability, whose ages ranged from 17 to 42.3 years. Also measured were the frequency of parental attendance at competition and whether or not parents volunteered for Special Olympics. Results indicated that mothers and fathers who almost always watched their adult child compete experienced more reinforcement and more acceptability than parents who did not watch with the same frequency. This did not depend on their volunteer membership with Special Olympics, although mothers who had volunteered for the organization reporter more child-related stress than mothers who had not volunteered.
Open Access
Bullying Experiences among Children and Youth with Autism Spectrum Disorders
(Springer US, 01/02/2012) Cappadocia, M. Catherine; Weiss, Jonathan; Pepler, Debra
Few studies have investigated bullying experiences among children diagnosed with autism spectrum disorders (ASD); however, preliminary research suggests that children with ASD are at greater risk for being bullied than typically developing peers. The aim of the current study was to build an understanding of bullying experiences among children with ASD based on parent reports by examining rates of various forms of bullying, exploring the association between victimization and mental health problems, and investigating individual and contextual variables as correlates of victimization. Victimization was related to child age, internalizing and externalizing mental health problems, communication difficulties, and number of friends at school, as well as parent mental health problems. Bullying prevention and intervention strategies are discussed.
Open Access
CBCL Profiles of Children and Adolescents with Asperger Syndrome: A Review and Pilot Study
(Ontario Association on Developmental Disabilities, 2011-11) Schroeder, Jessica; Weiss, Jonathan; Bebko, James
There is increasing recognition of psychiatric co-morbidities in individuals with Asperger syndrome (AS) that extend beyond the core features of the disorder. Previous research with individuals with AS and autism are summarized. This study aims to examine the behavioural profile of a non-referred AS sample. The Childhood Behaviour Checklist (CBCL) was completed by parents of fifteen children and adolescents with AS (6–18 years). Elevated scores across all CBCL scales were found relative to the normative group. Social, thought and attention problems and anxiety and depressive symptoms were particularly elevated. Research and clinical implications are discussed.
Open Access
Child maltreatment, adolescent attachment style, and dating violence: Considerations in youths with borderline-to-mild intellectual disability
(Springer, 2011) Weiss, Jonathan; MacMullin, Jennifer; Waechter, Randall; Wekerle, Christine; The MAP Research Team
One of the most salient developmental tasks of adolescence is the entry into romantic relationship, which often involves developing attachments to partners. Adolescents with a history of maltreatment have been found to be at greater risk of insecure attachments to romantic partners than non-maltreated adolescents, and the interaction of maltreatment and insecure attachment style has been linked to dating violence. The current study examined attachment styles and dating violence in child welfare-involved adolescents with borderline-to-mild intellectual disability (n = 40) and with average IQ (n = 116). Despite reporting similar experiences of childhood maltreatment, IQ was found to interact with avoidant attachment style to predict the degree of dating violence victimization and perpetration experienced by youth. It is suggested that an avoidant attachment style is a risk factor for all maltreated youth, and holds a particularly strong effect on youth with lower IQ levels. These findings highlight the need for developmentally appropriate attachment and dating violence interventions for maltreated youth.
Open Access
Child, parent, and service predictors of psychotropic polypharmacy among adolescents and young adults with an autism spectrum disorder
(Mary Ann Liebert, Inc. publishers, 2014-11) Lake, Johanna K.; Weiss, Jonathan; Dergal, J.; Lunsky, Yona
Objectives: This study examined the child, parent, and service factors associated with polypharmacy in adolescents and young adults with ASD. Methods: As part of an online survey examining health service utilization patterns among individuals with ASD, parents provided demographic and clinical information pertaining to their child. This included information on current medication use, as well as information on clinical services received, clinical history, and parent wellbeing. Analyses examined the bivariate association between individual child, parent, and service variables and polypharmacy. Variables significantly associated with polypharmacy were included in a multiple variable logistic regression. Results: Of the 363 participants sampled, approximately one quarter were receiving two or more psychotropic drugs concurrently. The child’s psychiatric co-morbidity, history of hurting others, therapy use, and parent burden were predictors of polypharmacy. Conclusion: Adolescents and young adults with ASD are a highly medicated population with multiple factors associated with psychotropic polypharmacy. While there may be circumstances where polypharmacy is necessary, a richer understanding of what predicts polypharmacy may lead to targeted interventions to better support these individuals and their families. Findings also highlight the need to support families of children with ASD prescribed multiple psychotropic medications.
Open Access
Cognitive Behaviour Therapy for a Child with Autism Spectrum Disorder and Verbal Impairment: A Case Study
(Ontario Association on Developmental Disabilities, 2013) Ames, Megan; Weiss, Jonathan
The current case study describes the implementation of a number of modifications made to traditional cognitive behavioural therapy (CBT) to address anxiety in a child with autism spectrum disorder (ASD), aggressive behaviour, and mild intellectual impairment. Cognitive behavioural therapy (CBT) is the primary psychosocial therapy for the treatment of mood and anxiety disorders in typically developing children and those with ASD who have at least average intelligence quotient (IQ); however, less work has discussed how to address the needs of youth with ASD and cognitive impairments. The purpose of the present case study is to describe the use of modifications to the Coping Cat program (Kendall & Hedtke, 2006) in the treatment of anxiety of a 9-year-old boy, Chris. Chris participated in a modified group therapy with a substantial individual therapy component, due to behavioural and language difficulties. Modifications included visual aids as the primary method of treatment delivery, inclusion of special interests, physical play activities, and parental involvement. A number of qualitative treatment gains were noted in session; however, quantitative data did not support these gains. Limitations of the CBT group intervention and the need for tailoring supports to meet the cognitive needs of children with ASD, aggressive behaviour, and intellectual impairment are discussed.
Open Access
Comparative Effects of Mindfulness and Support and Information Group Interventions for Parents of Adults with Autism Spectrum Disorder and Other Developmental Disabilities
(Springer US, 03/04/2017) Lunsky, Yona; Hastings, Richard; Weiss, Jonathan; Palucka, Anna M.; Hutton, Sue; White, Karen
This study evaluated two community based interventions for parents of adults with autism spectrum disorder and other developmental disabilities. Parents in the mindfulness group reported significant reductions in psychological distress, while parents in the support and information group did not. Reduced levels of distress in the mindfulness group were maintained at 20 weeks follow-up. Mindfulness scores and mindful parenting scores and related constructs (e.g., self-compassion) did not differ between the two groups. Results suggest the psychological components of the mindfulness based group intervention were effective over and above the non-specific effects of group processes and informal support.
Open Access
Defining crisis in families of individuals with autism spectrum disorders
(SAGE Publications, 2014-11) Weiss, Jonathan; Wingsiong, Aranda; Lunsky, Yona
Parents of children diagnosed with autism spectrum disorder often report higher levels of depression, anxiety, and mental health–related issues. The combination of stressors and family adjustment difficulties can cause distress which may develop into a crisis. Understanding crisis in the family is important to mental health practice since it can serve as a guide in delivering service to at-risk families. This study investigated the subjective experience of crisis in 155 mothers of children diagnosed with autism spectrum disorder. Thematic analysis revealed that crisis is characterized by factors influencing four major areas: demands, internal capabilities, external resources, and subjective appraisal. Understanding what crisis means to families of individuals with autism spectrum disorder can help inform effective preventative and crisis services.
Open Access
Depression in youth with autism spectrum disorders: The role of ASD vulnerabilities and family-environmental stressors
(Taylor & Francis Group, 17/03/2015) Fung, Stephanie; Weiss, Jonathan; Lunsky, Yona
Individuals with Autism Spectrum Disorders (ASD) are at an increased risk of mental health problems, with depression being one of the most common presenting issues. The current study used a diathesis-stress model to investigate stressors [parent distress and negative life events (NLE)] and vulnerabilities (youth age and intellectual functioning) as predictors of depressive symptoms in youth with ASD. Parents of youth with ASD (N=91; ages 7 to 25 years) completed online questionnaires about demographic variables, distress, NLE, and youth depression. High parent distress and exposure to 3 or more NLE were associated with symptoms of depression in individuals with ASD. Also, youth with ASD who were younger, or who were noted to have average or above intellectual functioning, were reported to have higher depression levels than other individuals with ASD. None of the vulnerabilities were found to moderate the relationships between stressors and depression.
Open Access
Direct and Indirect Psychosocial Outcomes for Children with Autism Spectrum Disorder and their Parents Following a Parent-involved Social Skills Group Intervention
(Canadian Academy of Child & Adolescent Psychiatry, 28/11/2013) Weiss, Jonathan; Viecili, Michelle A.; Sloman, Leon; Lunsky, Yona
Objective: This study examined the direct and indirect outcomes of a social skills group intervention for children with high functioning autism spectrum disorders and their parents. Method: Thirty-five children and their parents participated in_the program evaluation. Children and parents completed measures of child social skills and problem behaviors. Children reported on their self-concept, and parents reported on their psychological acceptance and empowerment. Results: Results indicate significant increases in overall child social skills according to parent and child report, in child general self- worth, and in parent service empowerment and psychological acceptance. Conclusion: While past program evaluations of social skills groups highlight changes in social competence, taking a broader perspective on the types of positive outcomes suggests potential benefits for both child and parent.
Open Access
Empowerment and Parent Gain as Mediators and Moderators of Distress in Mothers of Children with Autism Spectrum Disorders
(Spring International Publishing, 2015-07) Weiss, Jonathan; MacMullin, Jennifer A.; Lunsky, Yona
Mothers of children with Autism Spectrum Disorders (ASD) experience considerable amounts of distress and experiences of crisis. The Family Adjustment and Adaptation Response model provides a theory for understanding the experience of distress and family crisis in families, and the purpose of the present study was to examine experiences of distress in mothers of individuals with ASD using this framework. We specifically investigated how parent empowerment and positive gain are related to their experiences of distress, whether as mediators or as moderators of child aggression. Participants included 156 mothers of children with ASD ranging in age from 4 – 21 years. Mothers completed an online survey of demographics, problem behaviors, family empowerment, positive gain, and distress. We conducted path analyses of multiple mediation and moderation. Results indicated that greater child problem behavior was related to less parent empowerment, which was related to greater maternal distress, supporting empowerment as a partial mediator. At the same time, greater child aggression was not related to maternal distress in mothers who report high rates of positive gain, suggesting that parent gain functions as a moderator. The implications for how and when clinicians intervene with families of children with ASD are discussed.
Open Access
Evidence-based Practice in Developmental Disabilities: What is it and Why Does it Matter?
(Ontario Association on Developmental Disabilities, 2007-11) Perry, Adrienne; Weiss, Jonathan
Open Access
Experiences of Families of Individuals with Intellectual Disability and Psychiatric Disorder
(Ontario Association on Developmental Disabilities, 2011-11) Syeda, Maisha; Weiss, Jonathan; Lunsky, Yona
Caring for individuals with intellectual disability often results in stressful experiences for family caregivers, even leading to crisis in some cases. This paper uses the Brief Family Distress Scale (BFDS) to assess the subjective experience of crisis in a clinical sample of 29 families of individuals with intellectual disability and psychiatric disorder. Our analyses determined that 58% of the families rated themselves as 6 or above on the BFDS, indicative of approaching crisis or worse. An analysis of the BFDS’ correlation with related constructs and stressors, and families’ need for certain resources and services are further discussed.
Open Access
Factors associated with caregiver burden among parents of individuals with ASD: Differences across intellectual functioning
(Wiley, 02/09/2014) Vogan, Vanessa; Lake, Johanna; Weiss, Jonathan; Robinson, Suzanne; Tint, Ami; Lunsky, Yona
Symptoms of autism spectrum disorder (ASD) persist into adolescence and adulthood, when access to health services and supports become difficult. Consequently, most adolescents and adults with ASD remain reliant on their families for support, often resulting in caregiver burden among parents. This study aims to investigate factors associated with burden in parents of adolescents and young adults with ASD, and to understand how these factors differ across varying levels of intellectual functioning. Of the 297 parents sampled, ASD severity, externalizing behaviors, medical comorbidity, and parent age predicted burden in parents of adolescents and young adults with ASD and an intellectual disability (ID), whereas an inability to pay for services predicted burden in parents of individuals with ASD and no ID. Factors associated with caregiver burden differed among individuals with and without ID and were not limited to symptom severity or mental health problems, but also extended to system factors.
Open Access
Family hardiness, social support, and self-efficacy in mothers of individuals with Autism Spectrum Disorders.
(Elsevier, 2013-09) Weiss, Jonathan; Robinson, Suzanne; Fung, Stephanie; Tint, Ami; Chalmers, Philip; Lunsky, Yona
Family hardiness is an important construct to understand coping in parents of individuals with Autism Spectrum Disorders (ASD), who are often at risk for considerable distress in the face of multiple stressors. The current study examined family hardiness, perceived social support and parent self-efficacy as predictors of family distress in 138 mothers of individuals with ASD, 4–41 years of age. Using a multiple mediation analysis, we demonstrated that perceived self-efficacy and social support mediated the link between the pile-up of stressors and family hardiness, and that hardiness was a partial mediator in explaining how stressors were associated with family distress. Researchers and clinicians should consider the role that perceived social support and parent self-efficacy play in explaining family hardiness, and how the perception of such hardiness is associated with less distress.
Open Access
History of Suicide Attempts in Adults with Asperger Syndrome
(Hogrefe Publishing, 2014) Paquette-Smith, Melissa; Weiss, Jonathan; Lunsky, Yona
Background: Individuals with Asperger syndrome (AS) may be at higher risk for attempting suicide compared to the general population. Aims: This study examines the issue of suicidality in adults with AS. Method: An online survey was completed by 50 adults from across Ontario. The sample was dichotomized into individuals who had attempted suicide (n = 18) and those who had not (n = 32). We examined the relationship between predictor variables and previous attempts, and compared the services that both groups are currently receiving. Results: Over 35% of individuals with AS reported that they had attempted suicide in the past. Individuals who attempted suicide were more likely to have a history of depression and self-reported more severe autism symptomatology. Those with and without a suicidal history did not differ in terms of the services they were currently receiving. This study looks at predictors retrospectively and cannot ascertain how long ago the attempt was made. Although efforts were made to obtain a representative sample, there is the possibility that the individuals surveyed may be more or less distressed than the general population with AS. Conclusion: The suicide attempt rate in our sample is much higher than the 4.6% lifetime prevalence seen in the general population. These findings highlight a need for more specialized services to help prevent future attempts and to support this vulnerable group.