Understanding the Mental Health Experiences of Autistic Students in Higher Education

Description

Our team would like to learn more about what factors affect the mental health of autistic students in university. We are looking for people who are: 1) diagnosed with autism AND/OR self-identify as autistic; 2) currently enrolled at the University of Calgary as a part-time or full-time student; and 3) can read and write in English.

As a part of this study, participants will complete an online survey asking about their mental health, autism, and experiences in university. This survey will take about 30 minutes to complete. Participants can also complete an optional follow-up interview to explore their experiences with mental health in more depth. This interview will take approximately 60 minutes (1 hour) to complete.

Implications

The number of autistic people attending higher education has increased over the last decade. However, people with autism often struggle to reach their full potential in higher education due to challenges like poor executive functioning and sensory issues, with many students dropping out or failing to graduate. One key challenge for autistic students is poor mental health, with an estimated 40 to 70% experiencing at least one mental health issue like anxiety, depression, or suicidal ideation. However, the reasons behind autistic students’ high rates of mental health problems remain somewhat unclear.

Our research study aims to better understand what factors are associated with the mental health of autistic students in higher education. What we learn from this study will help us improve autistic people’s ability to succeed in higher education, as well as contribute to solving the mental health crisis in higher education among autistic and non-autistic people alike.

Suicidality in youth with ASD: HPA and Cognition

Description

We would like to study how autistic youth respond to stress and how that relates to suicidal thoughts or behaviours. This will be done by measuring cortisol levels and thinking patterns before, during, and after a mildly stressful social situation in the lab. We are looking for people between the ages of 12 and 18 with a diagnosis of ASD. Your child may not have a history of suicide ideation or behaviour but they will be asked questions around this topic. Parents and teens must be fluent in English and able to answer questions verbally.

Participation involves three parts: 1) in-person assessments, 2), saliva collection (see collection aid attached) and 3) parent and youth questionnaires online. As a token of our appreciation, you will receive an $80 e-gift card.

Implications

Little is known about why STBs occur for a sizable proportion of individuals with ASD (66% reporting suicidal ideation and 35% have attempted suicide). Emerging research suggests that individuals with ASD exhibit risk factors for STBs that are inherent to their diagnosis (e.g., executive functioning difficulties, feelings of exclusion, cognitive rigidity and impulsiveness), as well as risk factors seen in the general population (co-morbid mental health issues, peer victimization, and adverse childhood experiences). Assessing for suicide risk is exceptionally challenging in this population and so far, no empirically valid measure of suicidality exists for youth with autism. Identifying bio-psycho-social risk factors for the development of suicidality in youth with autism is critical to informing the development of suicide risk assessment measures and for preventing lifelong suicidal behaviours and premature mortality in this population.

This is the first study to examine the role of biological vulnerabilities (HPA axis reactivity) in suicidality in autistic youth, and how cognitive deficits interact with these vulnerabilities.

Variability of STBS in autism: Neurological Biomarkers

Description

We would like to learn more about suicidal thoughts and behaviours (STBs) in youth and young adults with autism spectrum disorder (ASD). We are looking for people between the ages of 12 and 18 with a diagnosis of ASD and who have attempted suicide once in the past year. Parents and teens must be fluent in English and able to answer questions verbally.

Participation includes three parts 1)an in-person assessment, 2)fMRI scanning (weekly, once a week for four weeks) and 3) reporting on mood and suicidality at home.

Implications

Little is known about why STBs occur for a sizable proportion of individuals with ASD (66% reporting suicidal ideation and 35% have attempted suicide). Emerging research suggests that individuals with ASD exhibit risk factors for STBs that are inherent to their diagnosis (e.g., executive functioning difficulties, feelings of exclusion, cognitive rigidity and impulsiveness), as well as risk factors seen in the general population (co-morbid mental health issues, peer victimization, and adverse childhood experiences). Brain structure and function have been heavily implicated in the development of STBs in neurotypical adults.

This will be the first study to look at brain structure and function as a risk factor for STBs. We would like to identify potential biomarkers in the brains of youth and young adults with ASD by studying the relationship between scans of the brain and participant’s daily ratings of STBs. In other words, we would like to know if we can see changes in the brain that happen when people are experiencing STBs.

Body Image in Adolescents with and without ASD

Description

We are currently recruiting for one of our Ph.D. students’ dissertation project which is examining body image and eating behaviours in teenage girls with and without autism. We are recruiting girls aged 12-17 and a parent/guardian to participate in this study which will consist of a) a brief phone call to go over consent and ensure eligibility and b) a 30-minute online survey completed by both the teen and parent. Parents and teens must be fluent in English and able to answer questions verbally.

Participation includes a brief phone call where we will confirm eligibility, go over informed consent, and a complete brief interview about your teen’s eating behaviours. After this phone call, links to complete the online questionnaires (a parent questionnaire and a teen questionnaire) will be emailed to you. These questionnaires will take approximately 30 minutes each to complete.

Implications

It has historically been recognized that many young children with autism spectrum disorder (ASD) experience feeding and eating issues (e.g., picky eating, sensitivity to food textures). In the last decade, the relation between ASD and the eating disorder anorexia nervosa (AN) has received increased research attention, with researchers suggesting high rates of overlap between these disorders. Such research has primarily been conducted from the perspective of the occurrence of ASD symptoms in adults with AN, and researchers are just beginning to examine the occurrence of disordered eating symptoms in persons with ASD.

This line of research has potential implications for the prevention, identification, and treatment of co-occurring disordered eating and ASD. However, a critical problem that has been overlooked to date is the experience and role of body image in this population, especially how it relates to disordered eating.

The aim of this study is to examine if autistic adolescent females differ from their peers without autism in the way they perceive their bodies and understand how body image disturbances may relate to eating and weight control behaviours in this population

Families Facing COVID-19: Perspectives from Caregivers of Persons with Autism

This study is in collaboration with Dr. Connor Kerns at the University of British Columbia and Dr. Jonathan Weiss at York University.

Description

This is a Canada-wide online survey that takes about 15-30 minutes to complete.  The survey asks questions about: 1) demographic information related to the autistic person (e.g. gender, ethnicity, diagnoses), the family (e.g.number of people living in the household, financial situation, etc.), and the caregiver (e.g. gender, age, marital status); 2) disruptions in the family’s life as a result of COVID-19 (e.g. whether anyone in the family has had COVID-19, whether they had to apply for employment insurance, whether they have had to work from home, whether they have experienced financial hardship, etc.); 3) the caregiver’s own perceived stress, mental health, well-being and coping, and 4) the autistic person’s mental health and coping.

You are eligible to participate in this study if you:

• are a caregiver (parent or legal guardian) of a child or adult with autism

• Live in Canada

• Are able to read and write in English

Implications

The COVID-19 pandemic is a stressful time for everyone, and it may be especially stressful for individuals with neurodevelopmental disorders such as ASD and their families. Regular routines may be disrupted, finances may be tight and uncertain, and supports and services that families may have otherwise been accessing (e.g., therapies, respite, counselling, support groups and other social networks) may be harder to reach.  When these changes happen, the behavioural and emotional challenges that often occur in children with ASD can become more problematic – adding even further to caregiver stress levels.

The aim of this study is to understand the impact of COVID-19 on the lives of autistic individuals and their families. What we learn from this study will help us identify the current needs and priorities of families during the pandemic. We would also like to know how we can better support families of children with ASD who are already vulnerable to stress and mental health concerns.

Understanding the Experiences of Individuals with ASD and Their Involvement with First Responders

This study is in partnership with the Society for Treatment of Autism (STA). It is funded by the Alberta Children’s Hospital Research Foundation

Description

This exploratory study will describe and summarize both the positive and negative accounts of individuals (and their families) with ASD who have had contact with a first responder (fire, police, paramedic, etc.). Participation in the study will involve an interview (60 minutes max), which will be conducted either in-person or over the phone (whichever you prefer). In addition to being asked to share your stories, questions asked may include: How would you rate your experiences with first responders in the community? [For individuals with ASD] Ideally, how would you like to be treated by first responders? Do you feel like the first responder treated you with respect? What could the first responder have done differently?

Implications

While there are no current figures for ASD involvement in the criminal justice system (Murphy and King, 2014), there is evidence to suggest that individuals with ASD can and do come into contact with the legal system, both as victims (Linblad and Lainpelto, 2011; Mayes, 2003) and as suspects (Woodbury-Smith and Dein, 2004). A lack of proper understanding of ASD means that these individuals may be especially vulnerable during their encounters with first responders. Notably, individuals with autism are seven times more likely to come in contact with law enforcement than their neurotypical peers (Curry, 1993). Coupled with social differences and challenges with communication, these interactions have the potential to lead to harmful mis­understandings.

Peer Mentorship Program: Supporting Students with Autism Spectrum Disorder

This project is in collaboration with faculty and students at the University of Calgary. It is funded by The University of Calgary’s Campus Mental Health Strategy.

Description

This research project includes two parts: 1) conducting a needs assessment of current University of Calgary students with ASD, which will inform us of the challenges and needs experienced by current students, how well currently available supports are addressing these needs, and how these supports can be improved; and 2) evaluating the success of a peer mentorship program that will be introduced at UCalgary for the first time in 2020. In this program, students with ASD will be paired with a graduate student mentor that they will meet with regularly, and have the opportunity to participate in social gatherings and events.

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.

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.

Description

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.

Implications

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

Description

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.

Implications

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.

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. 

DESCRIPTION

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.  

Implications

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.

DESCRIPTION

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.   

Implications

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.