Factors Contributing to the Late Diagnosis of Autism Spectrum Disorder in Females
This study is in collaboration with health practitioners from Alberta Health Services (AHS) and the Autism Diagnostic Clinic. It is funded by the Alberta Children’s Hospital Foundation.
This research project aims to understand the demographic and clinical factors that may contribute to a late diagnosis of ASD in children and youth. A number of factors have been suggested to impact the diagnostic process in children, including the heterogenous presentation of symptoms in ASD and the co-occurrence of mental and physical health disorders. It has also been proposed that females receive a diagnosis of ASD much later than males. Additionally, this research project aims to determine if sex mediates this relationship, that is, if females have different factors that predict late diagnosis compared to males. Many of the above-mentioned contributing factors that may lead to late ASD diagnosis, occur more frequently in females than males.
The onset of ASD typically occurs prior to the age of three, but can be diagnosed as young as two years of age. Despite this, there are many children that do not receive a diagnosis until school age, defined here as five years of age and older. Delays in diagnosis may result in children missing out on early intervention, which has been shown to drastically disrupt a child's cognitive and social development. Further, identifying and diagnosing ASD in a timely manner has been found to improve individual’s quality of life, as well as aid in reducing social, emotional, and behavioural difficulties.
Anxiety and Depression in Youth with Cerebral Palsy: The Role of Physiological Risk Factors
This study is in collaboration with Dr. Melanie Noel, Dr. Daniel Kopala-Sibley, Dr. Elizabeth Condliffe, Dr. Laura Brunton, and health practitioners from Alberta Health Services (AHS). It is funded by The HBI Robertson Fund for Cerebral Palsy Research.
This study aims to investigate the role of physiological risk factors including pain, fatigue, and sleep in the development of internalizing issues in youth with Cerebral Palsy (CP).This study will determine whether there are associations between common secondary health symptoms (pain, fatigue, and disordered sleep) and anxiety and depression symptoms in a large sample of youth with CP.
Anxiety and depression are highly prevalent in youth with CP, affecting about 57% of individuals, with symptoms often persisting well into adulthood. It is unknown why anxiety and depression develop and persist in this population and these issues can lead to significant academic, adaptive, and social difficulties, decreased quality of life, and can have a substantial economic burden on the health care system. By understanding the associations between pain, fatigue, disordered sleep, and anxiety and depression, findings from this study will identify health behaviours that can be targeted with effective evidence-based treatments.
Characterizing Suicidal Ideation and Behaviours in Children and Youth with Autism Spectrum Disorder
This study is funded by the Alberta Children’s Hospital Research Foundation
The aim of this study is to characterize suicidal thoughts and behaviours (STBs) and identify potential contributing factors for STBs in children and youth with Autism Spectrum Disorder (ASD). Online questionnaires and in-person interviews with caregivers will ask about their child’s STBs including duration, frequency, hospitalizations, and services received, as well as potential contributing factors, including stressful life events, bullying, and presence of mental health issues.
STBs are exceptionally common, and often overlooked in individuals with ASD, affecting upwards of 66% of individuals. Importantly, individuals with ASD are more likely to complete suicide, with the risk of death by suicide being 7 times higher in individuals with ASD than the general population. Currently, no validated suicide risk assessment measures exist for this population, which can result in inappropriate and ineffective intervention approaches. Understanding why so many children and youth with ASD experience STBs is critical for preventing lifelong problems and premature mortality in this extremely vulnerable and underserved population.
Anxiety in Children
and Youth with Autism Spectrum Disorder
This study is in collaboration with health practitioners from Alberta Health Services (AHS) and the Neurodevelopmental Disorder Integrated Health Initiative. It is funded by the Alberta Children’s Hospital Foundation.
This research project investigates the effectiveness of an anxiety intervention called Facing Your Fears (FYF), which is a group CBT approach for the treatment of anxiety in high-functioning children and youth with ASD that has been adapted to meet the cognitive, linguistic, and social needs of this population. The purpose of this study is to replicate and extend previous research showing the effectiveness of FYF in reducing anxiety symptoms in children and youth with ASD. Additionally, it aims to investigate the impact anxiety symptoms have on the quality of life of the child and their parents, as well as the cascading effects of an improvement in anxiety symptoms on a child or youth’s home and school environment.
Anxiety is highly prevalent in children with ASD, and has significant impact on the child, their family, and the mental health and education system. There is a need to identify feasible, appropriate, cost-effective, and evidence-informed prevention and intervention strategies. By determining the impact of anxiety, investigating the effectiveness of FYF, and understanding the cascading effects of FYF on home and school environments, this study will provide further insight into what intervention strategies are appropriate for this population.
Caregiver Stress and Comorbid Autism Spectrum Disorder and Epilepsy
This study is in collaboration with Dr. Deborah Dewey and health practitioners from Alberta Health Services (AHS). It is funded by the University of Calgary Department of Pediatrics Innovation Award.
This research project examines family experiences and parental stress of caregivers of children with both autism spectrum disorder (ASD) and epilepsy. As such, the neurocognitive, social-emotional, behavioural and adaptive profiles of children with both ASD and epilepsy, as well as those with ASD only and epilepsy only, are explored through a neurocognitive assessment battery. Further, their reported quality of life and the quality of life of their caregivers is reported through self-report questionnaires. A secondary study objective is to describe the experiences of those families of children and youth with ASD and epilepsy who have received services from the Autism-Epilepsy Clinic at the Alberta Children’s Hospital (Calgary, AB), that is, their satisfaction with the clinic, and the factors that may help improve families’ experiences at the clinic.
Caregivers of children with ASD report significantly higher levels of stress than caregivers of typically developing children. Similarly, caregivers of children with epilepsy report a poorer quality of life than caregivers of typically developing children. Epilepsy is common in children with ASD, affecting 21% to 35% of these individuals. Despite the high prevalence of children with ASD who have comorbid epilepsy, little is known about this population’s neurocognitive, behavioural, and social-emotional development. Further, there is limited knowledge on the quality of life of these children and their caregiver’s. Understanding the outcomes of children with ASD and epilepsy and their caregivers could help to mitigate the substantial impact of these comorbid disorders on children’s cognitive and socio-emotional development, daily functioning, and quality of life. Learning about these families’ experiences with specialized services will enable us to identify potential family-centered care strategies that best support both children with co-occurring ASD and epilepsy and their caregivers. Furthermore, examining families’ satisfaction with the clinic will help ensure that health practitioners in the clinic are meeting the needs of patients and their families.
Developmental, Mental Health, and Brain Profiles of Children with Multiple Early Risks
This study is in collaboration with Dr. Catherine Lebel, ACHRI Behaviour and Developing Brain Theme lead, Dr. Ben Gibbard, Director of the Cumulative Risk Clinic in Calgary, and Chris Tortorelli, Associate Director at Calgary and Area Children’s Services. The research is funded by the Alberta Health Services Addictions and Mental Health Strategic Clinical Network and the Alberta Children’s Hospital Research Institute.
This research project examines children and youth exposed to alcohol prenatally, and postnatal risk factors that may contribute to their outcomes. Understanding the effects of alcohol in the context of the child is difficult due to variability in the volume consumed, drinking style (i.e. binging vs. infrequent drinking), and timing (i.e. which trimester the alcohol is consumed). Children/youth in the study have confirmed prenatal alcohol exposure, and most have Fetal Alcohol Spectrum Disorder (FASD). The goal of this study is to better characterize prenatal risks that include the use of noxious substances (i.e. street drugs), maternal mental health disorders, poor prenatal care, and/or exposure to violence, as well as postnatal risks that may include caregiver mental health issues and/or toxic stress, including but not limited to abuse, exposure to violence, and neglect. Children aged 7-15 are currently being recruited to participate, in which they have an MRI scan at the Alberta Children’s Hospital to measure brain structure and function, followed by comprehensive neuropsychology and mental health assessments. The study aims to better characterize children and youth exposed to alcohol by considering multiple pre- and post-natal risk factors.
Prenatal alcohol exposure is the leading preventable cause of developmental disabilities in North America. Fetal alcohol spectrum disorder (FASD) is associated with prenatal alcohol exposure and is very common – even more so than autism spectrum disorder – affecting approximately 4% of children in Canada. FASD is typically characterized by cognitive, behavioural, and brain deficits. Individuals with FASD also experience a number of secondary issues, including academic difficulties, delinquency, and mental health issues. The condition is sometimes referred to as an “invisible disorder,” as many children with FASD present with few or no physical symptoms. There is a critical need to better understand children and youth prenatally exposed to alcohol, in order to guide effective treatment and intervention. This study will provide further insight into the cumulative impact of prenatal and postnatal experiences in children and youth exposed to alcohol.
Understanding the Developmental Concerns and the Diagnostic Process of Common Childhood Disorders and Typical Development
This study is funded by the Alberta Children’s Hospital Research Foundation.
This research project is examining the diagnostic process of children and youth with autism spectrum disorder (ASD) within Alberta, Canada, and replicating previous findings related to the diagnostic process in this population. Information regarding: 1) initial diagnoses; 2) multiple diagnoses and comorbid psychiatric or health conditions; 3) delays in diagnoses; and 4) satisfaction with diagnoses is collected through an online survey by both caregivers of children with ASD, and individuals with ASD.
Many families of children with ASD describe the process in obtaining a diagnosis as an extremely frustrating and stressful experience. Individuals with ASD may experience difficulty in obtaining a diagnosis, may be misdiagnosed, or may receive multiple diagnoses. Delays in diagnosis have been shown to reflect delays in recognizing early symptoms of ASD, resulting in children missing out on early intervention therapies. Early intervention has been shown to drastically affect a child's developmental trajectory in regards to their cognitive development and social interaction. The implications of missing early services can be seen throughout adolescence and into adulthood. Further, delays in diagnosis have been shown to create dissatisfaction among families and caregivers of children with ASD, and may contribute further to the stress they experience. Understanding caregivers' or individuals' experiences will aid in refining current diagnostic procedures for health practitioners, and subsequently help reduce the frustration that is often reported throughout the diagnostic process.