Research

Learning from autism spectrum disorder

The Autism Research Centre makes a difference in the lives of people with autism spectrum disorder (ASD). Our research is helping us learn more about how to recognize ASD in young children, improve health care for people with ASD, and find better ways to educate professionals and the public.

Current research projects

An examination of vaccination rates and related factors in children and adolescents with ASD

Scientific principal investigators: J.H. Filliter, L. Dodds
Funding: NSHRF Establishment Grant

Children and teens with autism spectrum disorder (ASD) may not be fully vaccinated for several reasons, including: 1) parent/guardian concern that vaccines may contribute to ASD or make symptoms worse, 2) difficulty with medical procedures, including needles, in many youth with ASD, and 3) other factors that result in people being hesitant about or missing vaccinations. Unfortunately, we don’t know much about vaccination rates in youth with ASD, nor do we understand all of the factors that may contribute to them.

We plan to conduct two studies. The first will tell us how many youth with ASD living in Nova Scotia are vaccinated. Using birth, health, and vaccination databases, we will examine how often youth with ASD receive vaccinations at school compared to their siblings and their peers without ASD. We expect to find lower vaccination rates in youth with ASD than in comparison groups. In the second study, we will explore factors that may influence vaccination of youth with ASD. We will ask parents of youth with ASD to participate in focus groups and complete surveys. We are interested in learning what parents consider when deciding about vaccinating their children with ASD. We also want to understand what encourages or discourages vaccination in this population.

This research is s important because vaccines are critical for our disease prevention strategy and individuals with ASD represent at least 1% of the population. Low rates of vaccination in youth with ASD would expose them and others to increased risk of infectious disease, The results of this study will provide important evidence to support policy and practice. If we find that youth with ASD are under-vaccinated, public health officials, researchers, clinicians, and families will need to work together to address this issue. Individuals with ASD have a hard time accessing health care services throughout their lives. This places them at increased risk for a wide range of medical problems. Our healthcare system must begin to respond to the unique needs of people with ASD. Working to ensure access to vaccination is an important step in this direction.

Antipsychotic monitoring in children and adolescents with ASD

Scientific co-principal investigator: J.H. Filliter
Funding: IWK Establishment Grant

In recent years, the Food and Drug Administration (FDA) has approved the use of second generation antipsychotics (SGAs), including Risperidone (in 2006) and Aripiprazole (in 2009), to treat irritability in children and adolescents (youth) with autism spectrum disorder (ASD). It has been established that SGAs can produce a number of side effects including: increased appetite, weight gain, type 2 diabetes, cardiac and neurological symptoms. As SGAs can be associated with serious side effects, careful monitoring is a critical component to prescribing these medications to youth with ASD. Specific practice guidelines have been developed to support physicians in monitoring youth who are prescribed SGAs.

In this study, we will be focusing on the guidelines put forward by the Canadian Alliance for Monitoring Effectiveness and Safety of Antipsychotics in Children (CAMESA). Anecdotal evidence suggests that it may be particularly challenging to monitor SGAs in youth with ASD, for whom medical procedures can be very challenging. Core and associated symptoms of ASD can make it difficult for youth to: 1) understand the information and instructions provided by clinicians, 2) communicate their own needs, 3) tolerate changes in their typical routines, 4) adapt to unfamiliar healthcare environments, 5) interact with unfamiliar healthcare providers, and 6) be exposed to stimuli that may exacerbate existing sensory sensitivities. Add to this a high rate of specific medical fears and phobias and it is not surprising that physicians experience difficulty carrying out guideline-consistent monitoring of SGAs in youth with ASD.

Considerable research has been conducted regarding the use of SGAs in youth with ASD, particularly regarding the efficacy of these drugs in decreasing symptoms such as irritability and aggression. However, we know very little about: 1) rates of adherence to monitoring guidelines for youth with ASD who are prescribed SGAs and 2) barriers that contribute to difficulty monitoring SGAs in this population. We intend to conduct a series of studies to address these gaps in knowledge. We expect that this project will begin to elucidate the difficulties that providers face in monitoring SGAs in youth with ASD and will help to inform follow-up prospective and retrospective studies of monitoring practices. Our eventual goal is to develop youth-, family-, provider-, and/or system-level interventions to support SGA monitoring in youth with ASD.

Building ALliances for Autism Needs in Clinical Encounters (BALANCE)

BALANCE is an online, interactive program that provides information and activities designed to help healthcare providers learn more about ASD, and practice ways to effectively tailor their care to meet the individual needs of each child and family. It is based on the dissertation research of Stephanie Snow, under the supervision of Drs. Jill Chorney and Dr. Isabel Smith.

The aim of BALANCE is to make sure that healthcare professionals have the knowledge, skills, and support to feel comfortable caring for youth with autism spectrum disorder and their families.

A link to the BALANCE website can be found here.

Bilingually exposed children with autism spectrum disorder: Language and socio-communication outcomes

This research uses data gathered as part of the Pathways Study:
Principal investigator: P. Szatmari
Halifax PI: I Smith
Funding: Canadian Institutes of Health Research
Lead investigator of this sub-study: T. Sorenson Duncan & A. Richard

Despite concerns of many families and healthcare providers, emerging evidence suggests that bilingually exposed children with ASD have similar language, behavioural, and cognitive outcomes to monolingually exposed children. Furthermore, excluding children from exposure to the minority in favour of the majority language could lead to negative consequences, such as reducing engagement and closeness with family and community. Therefore, in the current study, we aim to understand the characteristics of families that continue and those that stop using the minority language with their children with ASD. In addition, we examine the language and social communication outcomes associated with these language choices.

BRIGHT Coaching: A developmental coach system to empower families of preschoolers with developmental delays

Principal investigators: A. Majnemer & M. O'Donnell
Halifax Co-I: J. Filliter
Funding: Canadian Institutes of Health Research Strategy for Patient-Oriented Research Networks in Chronic Disease, IWK Health Centre Foundation

Children with developmental delays tend to struggle in the development of critical skills during the preschool years. For parents, accessing the best diagnostic and interventional care/services during this important period is often difficult. This study is investigating whether a standardized and nationally available online education tool and coaching resource is feasible and helpful to parents as their preschool child transitions to school entry. This is a Strategy for Patient-Oriented Research (SPOR) Initiative. Learn more & watch a short video with a 2021 project update:  https://www.child-bright.ca/bright-coaching 

Earlier detection and diagnosis of ASD in school-age children: A School-Health-Autism Research Partnership (SHARP) initiative

Scientific principal investigator: I.M Smith
Funding: IWK Foundation TRIC Level 3 Grant

Currently, children suspected of having autism spectrum disorder (ASD) after they enter school can wait a long time for specialist diagnostic assessments by the IWK Autism Team. In this School-Health-Autism Research Partnership (SHARP) study, clinicians and researchers from the IWK have joined forces with professionals from the Halifax Regional School Board (HRSB) to test a better way of assessing young school-aged children for possible ASD. The SHARP team will offer a coordinated assessment for children in grades 1 through 3 whose school-based teams, including the children’s parents, agree would benefit from a multidisciplinary ASD assessment. With grant funding from the IWK’s Translating Research Into Care program, we will implement and evaluate this collaborative assessment model, compared to usual care. We anticipate that the new approach will yield more timely diagnosis of ASD in the early school years. In turn, we expect improved parent, teacher, and healthcare provider satisfaction, and more efficient use of resources.

Optimizing impact of community-based early intervention for children with autism spectrum disorder

Principal investigator: I.M. Smith
Funding: Canadian Institutes of Health Research

We hope to identify characteristics that might tell us in advance which children will have the best responses to the early intensive behavioural intervention (EIBI) program in Nova Scotia. It is important to make sure that the program has the best possible impact for the most children in return for the financial and time investment in these services. With this information, we could make changes that we hope would improve children’s outcomes in the program. We are also interested in learning what measures may be related to better quality of life for families.

Optimizing Reading Comprehension in Children with ASD: The Relationship between Language and Literacy Development

Principal Investigator: Tamara Sorenson Duncan
Co-Investigators: Isabel Smith and Hélène Deacon
Funding: IWK Research Fellowship

For some children with autism spectrum disorder (ASD), reading comprehension is a noted area of challenge. Difficulties in reading comprehension, understanding the meaning of texts, often persist even when children are exceptionally skilled at identifying the words in a text. This project investigates what might be the reason that some children with ASD  have difficulties with reading comprehension and focuses specifically on the relations between oral language and reading comprehension.

Parent Perspectives of Early Screening for Autism Spectrum Disorder

Principal Investigator: I.M. Smith
Funding: IWK Project grant

Children followed by IWK Health Centre’s Perinatal Follow-Up (PFU) program are born too early and/or experience serious medical problems at birth. They are at high risk for developmental difficulties, including ASD. The Parent Rated Observation of Communication, Emotion, Social Skills (PROCESS) is a parent questionnaire designed to help identify signs of ASD in children under 2 years.

Researchers are investigating the PROCESS questionnaire and it’s effectiveness. Parents registered in the IWK’s PFU program are asked for their feedback specific to questionnaire. This feedback will then be used to make improvements. The questionnaire will be offered to parents in the PFU program when their child is 18 months old.

Researchers will document the number of parents who complete the measure and whether they prefer to fill it out on paper or online. They will also explore the usefulness of screening for ASD using the PROCESS questionnaire from both a family and a clinical PFU perspective. Results will be used to design a larger study to attempt to show the effectiveness of PROCESS screening in predicting ASD at age 3.

Pathways to better developmental health in autism spectrum disorder: Phase III

Principal investigator: P. Szatmari
Halifax site PI: I. Smith
Funding: Canadian Institutes of Health Research

People with Autism Spectrum Disorder (ASD) follow different developmental paths. The Pathways in ASD study is working to map these differences for a diverse group of over 300 Canadian children with ASD. Researchers at Halifax’s IWK Health Centre are proud to be one of 5 provincial sites participating in the study. The study began when participants were diagnosed with ASD as preschoolers. Researchers are measuring factors such as children’s social and communication abilities, families’ well-being and community treatment resources, to determine which factors are associated with better outcomes for children and for families. Pathways Phase III began in 2017 as participants entered adolescence and is now the longest longitudinal research project studying children with ASD in Canada. The research team is excited to be exploring new questions about adjustment to varied stages of human development.

In 2017 the Pathways in ASD video was submitted to the Canadian Institute for Health Research as part of the Human Development, Child and Youth Health (IHDCYH) video competition. The Research team was proud to receive the first place prize in the competition!  WATCH THE VIDEO - Pathways in ASD: A family's story.

Predicting attrition in a longitudinal study of children with autism spectrum disorder

This research uses data gathered as part of the Pathways Study:
Principal investigator: P. Szatmari
Halifax PI: I Smith
Funding: Canadian Institutes of Health Research
Lead investigator of this sub-study: A. Richard

Participant drop-out, termed attrition, is unavoidable in long-running multi-component studies such as the Pathways in ASD study. Importantly, attrition threatens the external and internal validity of longitudinal studies. This is worrying because findings from longitudinal studies are of unparalleled value for understanding development. Therefore, to provide insight into the causes and consequences of attrition, we are conducting a comprehensive assessment of the factors predicting attrition in a longitudinal study of children with ASD. In parallel, we are also conducting a systematic review on this topic. This work may help us to find ways to reduce the biasing effects of attrition. It may also help us to improve families’ participation experience.

The 'PRIMeR' Study: Virtual Parent-Coaching Intervention for 'Minimal Responders' with Autism Spectrum Disorder

Principal investigator: I. Smith & D. Chitty
Funding: Canadian Institutes of Health Research

Increasing numbers of children receive diagnoses of autism spectrum disorder (ASD). This brain-based condition affects children’s communication and social development, and their play and interests may differ from those of typical peers. Canadians have made large investments to provide specialized early intervention programs for this growing group of children. These programs can greatly improve the lives of children with ASD and their families. However, not all children benefit equally. Nova Scotia’s Early Intensive Behavioural Intervention (NS EIBI) program is unlike the early intervention programs in other provinces. Although it provides fewer hours of intervention than most other programs, results are comparable with some children making large gains. We must learn more about how to make a difference for all children with ASD, including those with the greatest learning challenges.

Our research team designed a brief intervention to boost children’s response to treatment. We identified children who were likely ‘minimal responders’ to NS EIBI, then showed that the intervention built the skills that should improve response to the EIBI program. We are taking the next steps in refine and test this intervention. When in-person treatment was halted by the pandemic in 2020, we learned that ‘virtual’ interventions provided online to parents may reduce barriers for families seeking help. In our new study, parents will receive live online coaching to build their children’s skills before starting the EIBI program. We will monitor children’s progress and compare the gains made in EIBI to those of similar children whose parents do not receive the same coaching. We will also talk to parents about their experiences to learn about the positive aspects of the intervention and what we could improve. We want to determine whether the on-line coaching intervention is effective in helping parents to promote their children’s development, and how acceptable the program is for families.

Responding to the needs of youth with ASD in the emergency department: Stakeholder consultation and outcome measure development

Scientific co-principal investigator: J.H. Filliter
Administrative co-principal investigators: K. Kempton, G. Rose-Williams
Funding: IWK Foundation Level I TRIC Grant

We plan to develop an intervention to help ensure children and teens with Autism Spectrum Disorder (ASD) receive services that meet their needs when they are having a mental health crisis. In the first part of this project, we will seek input from parents of youth with ASD, as well as from health care providers who work in the Emergency Department and those who specialize in the care of children and teens with ASD. We will ask them about aspects of current services are helpful and about improvements that could be made to help meet the needs of youth with ASD. Learning about what is important to parents and health care providers will also help us make sure that our intervention is making a difference in the things that matter to them.

We are currently recruiting children and teenagers with autism spectrum disorder who have visited the IWK Emergency Department during an emotional or behavioural crisis. To learn more about participating, please call the Autism Research Centre at 902-470-7275 or e-mail us at arc@iwk.nshealth.ca.

Social Media as a Social Tool for Autistic Adults

Principal Investigator: Tamara Sorenson Duncan
Co-Investigators: Isabel Smith, Jillian Filliter and Hélène Deacon
Funding: Donald Hill Family Postdoctoral Award

By reducing the demands of face-to-face conversation, social media has been suggested as a more welcoming social environment for autistic adults. If this is true, then this tool could reduce isolation and enhance social relationships for autistic individuals. This collaborative research examines social media use by autistic adults and asks what their social media use looks like. As an example, is social media a preferred platform for social interaction? Do the same social communication challenges that have been observed in face-to-face communication emerge in social media environments? 


Graduate student projects

Erin Dempsey (doctoral student)

MORALITY IN AUTISM SPECTRUM DISORDER: A SYSTEMATIC REVIEW 
Moral reasoning and decision-making help guide behavior and facilitate interpersonal relationships. How has autistic morality been interpreted by past researchers? A systematic review of the investigative literature on moral decision making among autistic children and adults was conducted. In general, moral psychology is similar between autistic and neurotypical individuals, yet small differences have often been interpreted as deficits. Erin remains hopeful that this review will motivate researchers to take a more strengths-based perspective of morality in autism in future research.

MORAL FOUNDATIONS THEORY IN AUTISM SPECTRUM DISORDER: A QUALITATIVE INVESTIGATION
Past research investigating morality in autism has assumed that mature morals develop as people learn to take the perspectives of others. Moral foundations theory suggests that moral psychology is not necessarily more or less mature but differs depending on culture. Given that moral foundations theory had not yet been investigated among autistic individuals, Erin chose to use this theory to understand autistic moral thinking from a strengths-based perspective. In this study, 6 autistic adults were interviewed. All five moral foundations of moral foundations theory were represented in the interviews, yet certain foundations appeared more prominent than others.

MORAL FOUNDATIONS THEORY AMONG AUTISTIC AND NEUROTYPICAL CHILDREN
The goal was to use moral foundation theory to better understand how autistic individuals think about morality. Erin consulted with two autistic adults before and after the research to obtain input into the design and interpretation of the study. Authors found that autistic and neurotypical children made similar judgements about morality, but autistic children were more likely to recommend punishment for violations of social norms that are not harmful. This latter finding could be related to the fact that autistic individuals are less likely to adhere to social norms due to their social communication differences. If autistic children are punished for behaving in socially atypical ways, this could reinforce a belief that such behaviour ought to be punished more so than among neurotypical children. 

Loriann Williams (doctoral student)

Efficacy of a brief intervention targeting a "low responder" profile in preschoolers with autism spectrum disorder
This research aims to develop an intervention for preschoolers who a) are diagnosed with an ASD, b) have not yet reached the age of eligibility to participate in the province’s publicly funded early intensive behavioural intervention (EIBI), c) are non-verbal or have low verbal ability, and d) show deficits in skills related to play, as well as low levels of positive emotion, like smiling and sharing laughter.

We know play is important for children in terms of learning and socializing with peers, and positive emotion sharing has a role in keeping social interactions going so that learning opportunities can be extended. Play and positive emotion have both been found to be related to favourable outcomes in the provincial intervention program (EIBI). It’s hoped that by bolstering these important skills, children’s potential will be maximized as they go on to participate in the EIBI program, to elementary school, etc. Parent training will also be a focus of this research, whereby parents will be coached in the strategies used with their children in this intervention so that they may implement the intervention at home, optimizing benefit for their children.

Kim Tan-MacNeill (doctoral student)

Sleep problems in children with neurodevelopmental disorders: barriers and facilitators to treatment and development of an online intervention for insomnia
Sleep problems, particularly insomnia, are incredibly prevalent in children with neurodevelopmental disorders, including those with Autism Spectrum Disorder (ASD), Attention-Deficit Hyperactivity Disorder (ADHD), Fetal Alcohol Spectrum Disorder (FASD), and Cerebral Palsy (CP). These sleep problems can have widespread negative impact on both children and their families. Using a series of online focus groups and interviews, we are exploring the perspectives of parents of 4-12 year old children with these neurodevelopmental disorders, as well as the health care professionals (HCPs) who work with them (including physicians, psychiatrists, nurses, clinical psychologists, occupational therapists, & behaviour analysts) on the barriers and facilitators they have experienced in seeking, accessing, and providing or implementing treatments for insomnia.

The results of these focus groups will be used to help develop an online intervention to treat insomnia in children with neurodevelopmental disorders, called Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD). Further research will include reviewing the literature on internet-based interventions for families of children with neurodevelopmental disorders, as well as usability testing of the website itself.

We are currently recruiting parents of and HCPs who work with children with ADHD, FASD, and CP -- for more information or to participate, please visit either http://tinyurl.com/hcpndd or http://tinyurl.com/parentndd .


Past Research projects

Learning and attention-related comorbidities in ASD

Principal investigators: S.E. Bryson, I.M. Smith
Funding: NeuroDevNet

Siblings of children with ASD are not only at increased risk for ASD than the general population, but they are also at increased risk for language and learning delays and disorders. We have followed a large group of high-risk siblings from infancy, and this group is now reaching 8-12 years of age. Using these participants, we will be look more closely at learning, attention and executive functioning to help further improve our understanding of the relationship between challenges that emerge in school-aged siblings (e.g., ADHD) and developmental pathways from infancy. 

Novel conceptual model of early symptom development in ASD: Role of attention control and emotional regulation in the emergence of ASD

Principal investigator: L. Zwaigenbaum, S.E. Bryson
Funding: Canadian Institutes of Health Research

This study is investigating the developmental pathways leading to the emergence of ASD in high-risk infants (i.e., younger siblings of children with ASD). We are interested in looking at the early behavioural and physiological markers of ASD in the first 3 years of life, with particular emphasis on the relationships among early attention control, joint attention and emotional regulation. We hope that this approach will help us to establish a threshold for earlier detection, diagnosis, and treatment of ASD. 

We are currently recruiting 6- to 12-month-old siblings of children with a diagnosis of ASD, and 6- to12-month-old siblings of children with no history of ASD.

Preschool Autism Treatment Impact (PATI) Study

Scientific principal investigator: I.M Smith

Funding: Canadian Institutes of Health Research, New Brunswick Health Research Foundation, Nova Scotia Health Research Foundation

The well-documented increased rate of diagnosis of autism spectrum disorder (ASD) has put pressure on publicly funded services to meet the needs of these children and their families. This has led to urgent calls by policy makers for evidence concerning the cost-effectiveness of early behavioural intervention services. The Preschool Autism Treatment Impact (PATI) study addresses this need by gathering critical information about children’s everyday functioning and behaviour, as well as the costs of intervention services undertaken by the public sector and by families. This study is the first of its kind in Canada to assemble a team consisting of researchers with expertise in ASD, health economists, health policy makers, and child development specialists from two provincial governments (New Brunswick and Nova Scotia). Data have been collected from over 300 families served by 15 teams across the two provinces.

Get more information on this study